Author Archives: Administrator

Spring 2012

Issue #48

President/Fundraising:

Louise Goulet: Phone: 584-1950

louise.goulet@sasktel.net

Vice President:

Shirley Gillander: Phone: 525-6377

Recording Secretary:

Olga Sereda: Phone: 693-1936

No email yet but we’re working on it

Corresponding Secretary:

Norma Redman: Phone: 532-4449

Newsletter co-Editor:

Janet Campbell: Phone: 757-0962

janet.campbell@uregina.ca

Treasurer/Newsletter co-Editor:    

Gerald Shauf: Phone: 634-3433

465WillowBay

Estevan,Sask.S4A 2G3

glshauf@sasktel.net

Saskatchewan Parking Program for the Disabled:   Phone: (306) 374-4448

Handicapped parking permits cost $10.00. Successful applicants receive parking placards allowing them to park in designated areas for handicapped. Applications are available at any branch of Saskatchewan Abilities, or any motor vehicle issuing office.  Ask your doctor if you qualify. Try to look at getting the placard as a way to make your life easier.

Each day is a new life.  Seize it!  Live it!

CALENDAR OF EVENTS

AWARENESS:

June is Scleroderma Awareness month.  If you were at the Bushwakker’s Steak night, you would have seen our new awareness brochures.  They are an attractive way to promote awareness.

They were printed by Concept Media, 2629 Angus Boulevard, Regina, Saskatchewan S4T 2A6.  Phone (306) 545-6099.  Concept Media also printed our floral note cards that we sell. Concept Media is owned and operated by Bob Anderson.  Bob and his family were Linda’s closest neighbors while they were going to school.

Fall 2012 MEETING:

The fall meeting of the Scleroderma Association of Saskatchewan will be on Saturday October 20, 2012 at the Wascana Rehabilitation Centre. A “Good Morning visit” with coffee/juice and snacks will begin at 10:00 AM with the meeting beginning at 10:30.

MEMBERSHIP FEES:  If you are receiving this newsletter by mail, please check your address label to see what your membership status is.  If it says PD12, you are paid for 2012. If it has X, your 2012 membership is valid as a result of a donation.  If there is nothing after your name, you have not paid for your 2012 membership.  Please remit $20.00 fees to SASK c/o Gerald Shauf at the above address if you have not already paid for 2012.  If you are receiving this newsletter by email and don’t know whether you have paid or not, please contact me.  Income tax receipts will be issued for memberships and all donations. Thank you for your support.

 

DISCLAIMER

The Scleroderma Association of Saskatchewan does not endorse any drugs or treatment. We wish only to keep you informed. Check any treatment with your own physician.

 I like writing poetry or shall I say rhymes,

And so for you folks I wrote a few lines:

Wonders of the Universe

The Golden Sun began her rise,

Lighting the deep ebony skies,

Rising up so full and free,

Searching now for her destiny.

Fluffy clouds soft and white,

Are drifting along in silent flight,

Reminding me of shifting sands.

Moved only by our Maker’s hands.

Mr. Wind with a mischievous smile

Is talking to me the hours beguile,

In a soft sighing whisper, sweet and low,

He’s telling me tales of long ago.

Last night Mrs. Rain had a terrible time,

Keeping those children of hers in line,

Lighting and Thunder just frolicked at play,

Shame on you both carrying on that way.

Please Mr. Moon grant a favour tonight,

Bring out your beams of slivery light,

Invite the stars to come along too,

I’ve room in my heart for all of you.

-Louise Goulet

Memorials

We wish to acknowledge the passing of the following members:

Claudette Hilderman – October 20, 2010

Jennine Hendricks – December 14, 2011

Dennis Stolz – December 26, 2011

Lorne Lymburner – February 16, 2012

Russell Filson – April 10, 2012

PROJECT SCLERODERMA

On April 23, 2012, I emailed a link for Project Scleroderma (http://projectscleroderma.com/) where a lady whose Mom passed away from Scleroderma, was trying to raise money to make an awareness documentary about Scleroderma.  My apologies to those who don’t have email. The following is copied from their website as of May 28, 2012.

“Welcome to Project Scleroderma!

This is a grass roots movement to produce a documentary about an autoimmune disease called Scleroderma. We just finished our first fundraising campaign for the project that will allow us to continue production on our film “Beneath The Surface”. We had only 35 days to reach $30,000 or all of our funders would receive their donations back. The Project Scleroderma Team is happy to announce that we did indeed reach our goal in time!! We are incredibly grateful to everyone who contributed to this campaign in any way, thanks to your support we are able to continue on our journey to raise awareness for this terrible disease.

People can make a difference in this world, and we will continue to do that while making this film. More updates to come as we now have much more work to do…”

Presidents Report Spring 2012

Greetings to all:

June is Scleroderma Awareness month.  You will see in the minutes of our April 21st meeting that we decided to hold a Scleroderma Awareness Fundraiser in the form of a Steak Night.  We chose to hold it at Bushwakker Brewpub in Regina on May 22nd.   It was a huge success with 125 tickets quickly selling and sadly leaving several on a waiting list.  We had door prizes, a 50/50 draw and entertainment by our very own Roberta Nichol.  I wish to thank everyone who worked to make this event successful.   Members in attendance felt it was an event they would like to pursue again.

To raise Awareness at a National level, the Scleroderma Society of Canada has invited each province to partake in a walk each June.   This is a large undertaking and we are not organized or prepared to participate this year.  If our members would like to walk next year, please let me know so we can work together to get a walk organized.  I have been told that the Running Room may assist us with this.

The Scleroderma National Conference is inBurnabyB.C. the end of September.  At least 4 of our members have decided to attend.  If you wish to join us please contact me for more information.

Our new website is up and running.  Be sure to view it at: www.sclerodermasaskatchewan.ca.   Gerald and his son-in-law were instrumental in setting up this website.  I wish to thank Gerald for the time and effort he has put into this undertaking and also for the information he has contributed to this site.

Our fall support group meeting is scheduled for October 20, 2012.  Please join us at Wascana Rehab Centre inRegina.

We invite you to contribute to our Newsletter and are always looking for Bits or Bites, Quacks or Quirks, Talent or Tales.  You may send these to Janet Campbell at janet.cambell@uregina.ca or Gerald Shauf at glshauf@sasktel.net

I hope you get a chance to enjoy sunshine this summer, that is, if it ever stops raining.   Remember to take time for yourself.  Rest, read, relax and stay healthy.  I look forward to seeing you in October.

Louise

Editor’s Note:

At our Spring Meeting in 2008, a motion was passed that travel expenses to the National Convention by our members would be approved to a maximum of $3000.00 per year.  Based on actual receipts, that maximum of $3000.00 would be divided by the number of members attending the conference.  If you are interested in attending, please contact Louise.

Twitter – Blogs – Facebook

 by Andrew Campbell

This column is for people who are on Twitter, blog or are on Facebook.

Terms-search symptom, search symptom w/ # (called a hashtag) eg: raynauds,

#raynauds, scleroderma, #scleroderma Users (w/ scleroderma or a family member with)-@walkforcure/@karenovasquez (runs both accounts, wfc is southernCalifornia’s scleroderma foundation. Other is personal. Probably the most active on twitter), @pixiecd13-new to scleroderma but has run a blog

for awhile b/c of other conditions, @onebloggergirl-new to twitter, runs a blog,

scleroderma+other conditions, Groups-people usually group by symptoms just jump into the conversation, great

community of people w/ rare and chronic diseases can be found by searching

#chronically awesome  Users from chronicallyawesome or general scleroderma users/groups, @julianna12369

(started the chronicallyawesome group),@gimpytweets, @kelsoopadoo,@cvcinc,

@growingthrupain, @sclerodermainfo, @sfdv1, @sclerodermami, @lupussurvivor, @pennysfund Blogs/Facebook- most of the chronically awesome bloggers can be found on Facebook.  Search “chronically awesome bloggers” or facebook.com/chronicallyawesomebloggers Walkforcure/karenovasquez’s blogs- walkforcure.org and themightyturtle.com Pixiecd13’s blog- pixiecd.com onebloggergirl-simplylettinggo.com

juliannas-whatthejules.com

Best way to meet is to add a few users. Watch who they interact with. Check their followers to meet more. Check profiles for blog links and health problems. Speak up.

Acknowledge and thank followers. Thank retweeters.  If you have any questions, please email acampbell500@gmail.com.

Minutes of April 21, 2012 Meeting

The spring meeting of the Scleroderma Association of Sask. held at the Wascana Rehabilitation Centre inReginaon April 21, 2012 with 18 in attendance.

President Louise Goulet called the meeting to order at 10:25 AM and asked for brief introductions around the table.

A moment of silence was observed for members who have died since our last meeting.

Joyce Kellington and Robert Nichol were thanked for bringing snacks to go with coffee.

The agenda was declared adopted as printed by Louise Goulet.

Minutes of our fall meeting were declared adopted as read.  In business arising from the minutes, the honorarium for guest speakers will be kept at $75.00.

Roberta Nichol has contacted Global TV and Access re: publicity but is not certain that anything has been broadcast.  Perhaps there is something on some websites.  It was suggested that we try Shaw Cable, also Global and CTV have 2 hr morning shows, for example “Morning Live” that may need items or interviews to fill time slots.

Gerald Shauf reported that 106 members were on the Newsletter mailing list, 10 asked to be removed, only 1 out of another 12 replied to a second inquiry, and now there are 87 on the mailing list including paid-up and unpaid members.  To date 32 have paid their 2012 memberships.  He has purchased a new printer for $184.00.

Our new website www.sclerodermasaskatchewan.ca may be up and running as soon as this weekend at a cost of $35.58 for 3 years for the domain address.

Bushwakkers Steak nights are held Tuesday evenings at a cost of $14.65 per person.  If we do this as a fund-raiser we would charge $25.00 for tickets and add a silent auction or 50/50 draw.  Vocal entertainment by Roberta Nichol could be added as well.

Treasurer Gerald Shauf reported a bank balance of $10,492.72.  As there was no discussion on it, moved by Gerald, seconded by Janet Campbell that the report be adopted as printed.  Carried.

In correspondence, 4 sympathy cards have been sent from our association.  Thank you notes were received from Muriel Stewart, the CSRG, and Dr. M. Baron.

Questions from SSC discussed and answered at our fall meeting were reviewed at the annual meeting.  SSC’s response is as follows:

To question #1 – we need to inform medical people about our disease ourselves.  We could send newsletters to doctors, especially our own, and to the Arthritis Society and use the website.

To question #2, SSC will hire someone to lobby for funds, find a national sponsor and try to have a new website – at present we receive newsletters from theU.S.andUnited Kingdomand ours goes to B.C.  A National Newsletter will be forthcoming.  Funding for the SSC is scarce as they have lost their pharmaceutical sponsor.

To question #3 – during Scleroderma Awareness Month in June Walkathons are currently held inHalifax,Winnipeg,Hamilton,Toronto, and B.C.  Each province should use their provincial floral emblem.

To question #4 – Louise Goulet represents our province on the SSC Board of Directors. Ontariohas a Support Group Leadership Resource Manual on how to set up a group and an education program about Scleroderma and how it affects the body.

Shirley Gillander, Roberta Nichol and Louise Goulet attended the SSC Annual conference in Quebec.  Topics covered were CSRG reports, Psychology, the GI tract, Lung involvement, heart involvement and the holistic approach.  Shirley specifically reported on how Scleroderma affects the lungs.  Roberta reported on the psychological component of Scleroderma including occupational therapy and the holistic approach.

Louise spoke about the CSRG, and said that Dr. Markland is no longer involved in the research group, so those patients in SK will have to see their own rheumatologists for tests.

Members were urged to send Gerald Shauf contributions to our newsletter on any topic.

The meeting was adjourned for lunch and reconvened at 1 PM with introductions again for those who had arrived for the afternoon program.

On the Steak Night Fund-raiser subject – our first choice is May 22nd, second choice is June 5th.  This will be confirmed as soon as possible.

In sharing time, members were asked if this part of our agenda should be in the minutes due to concerns about privacy of members when some subjects are discussed.  It was felt that we could omit names to ensure privacy.  Some members have found that calcinosis is a real problem.  One person had a sudden onset of symptoms affecting several organs quite seriously.  Some affected this way by Scleroderma have slowly improved, so there is hope.  One person who had serious effects from Scleroderma credits Mannatech and other herbals for her complete relief of symptoms.

Our guest speaker, Ruth Meier was introduced by Janet Campbell.  The details of her presentation on “Living Well with Chronic Conditions” follows.  She was thanked by Joyce Kellington.

Sharing continued with a request for more detail on Dr. Markland’s involvement with CSRG.  Some of the Research group’s reports may be on the website.  There was some discussion as to possible causes of Scleroderma.

The next meeting will be on Oct 20, 2012 inRegina.  Snacks will be provided by Roberta Nichol and Olga Sereda.

Janet Campbell moved that the meeting be adjourned at 3 p.m.

  Don’t let life discourage you; everyone who got where they are, had to begin where they were.

Living Well With Chronic Conditions

This topic was presented to the SK Scleroderma meeting attendees by Ruth Meier who has set up the program in the Regina Qu’Appelle Health Region.  She became interested because her son had the chronic condition called Retinitis Pigmentosa and is now blind due to the disease.  The program was developed atStanfordUniversityinCaliforniaand is now being presented in several provinces.  There are about 9 million people inCanadawho have some kind of chronic condition, so it is a much-needed program.  All chronic conditions have common problems such as fatigue.  Studies showed many areas of improvement when patients took this self-management program.  Self-management differs from education in that while education is disease-specific, self-management deals with chronic diseases, which have similar problems that impact lives and emotions.  Lay people can teach the program.  It is not a sit and listen class – involvement is necessary.  Goal setting helps to accomplish tasks.  The leaders have chronic conditions themselves.  Methods are lecturettes and brainstorming.  Materials used include the book “Living a Health Life with a Chronic Condition” available at no cost, a Manual for Leaders, Charts.  The program consists of 6 classes of 2 hrs each at no cost in SK.  In chronic conditions there is generally a gradual onset.  Causes are many, duration indefinite.  Diagnosis is often difficult and a cure is rare.  The doctor’s role is teacher and partner, and the patient is responsible for daily management of the condition.  A cycle chart was presented showing several symptoms, all of which contribute to disease.  Patients are taught to deal with symptoms such as fatigue, shortness of breath, pain, depression, stress and emotions.  Each week they are asked to set a goal and action plan in steps toward it, and report the following week.  Goals must be realistic.  Topics discussed at the sessions are fatigue, sleep management, medications, exercise, using the mind to manage symptoms, dealing with negative emotions, communicating with others – using “I” messages instead of “YOU” messages.  To date there have been 600 participants, and several have taken leadership training. (Groups are usually about 12 in number and anyone can participate whether patient, spouse, or whoever is interested in the program.  Evaluation forms done at the end of the 6 weeks program have been very positive.)  Chart #2 was a Self Management Toolbox, the “tools” being such things as Health Eating, Physical Activity.  Brochures titled “Put Life Back In Your Life” are available and the book “Living a Health Life With a Chronic Condition” can be found at Chapters Bookstore.  More information is available from the Regina Qu’Appelle Health Region at:

306-766-7207 or 1-800-667-1242.

Andrew Campbell offered to help members produce video testimonials for use on Youtube.  His email address is: acampbell500@gmail.com

CSRG (Canadian Scleroderma Research Group) study:

Dr. Markland has stepped down from the CSRG.  We are awaiting news on who will replace her.  We wish to thank her for her hard work in the position since its inception.

Useful Web Sites:

Scleroderma Association of Saskatchewan

https://sclerodermasaskatchewan.ca

Scleroderma Society of Canada

http://www.scleroderma.ca

CSRG – Canadian Scleroderma Research Group

http://www.csrg-grcs.ca

Arthritis Society                    Ph:1-800-321-1433

www.arthritis.ca

United Scleroderma Foundation (USA)

http://www.scleroderma.org

Scleroderma Research Foundation (USA)

http://www.srfcure.org

SASKFundraising & Awareness Items:

We have the following available:

  • Floral note cards:

There are 8 different floral designs in each package. Scleroderma contact information is printed on the back of each note card.  They are very pretty cards to use or give as gifts.  The cost for a package of 8 notes and envelopes is $6.00.

  • Lapel pins:  The attractive lapel pins are dark blue with Scleroderma printed on them in white letters.  The cost is $3.00
  • Magnetic ribbons.

These are similar to the lapel pins.  They are 8 inches x 2.5 inches and are $2.00 each.  Put them on your car or your refrigerator.

  • Awareness Pamphlets.

We now have a tent-style awareness pamphlet for distribution.

Please contact Gerald Shauf or Janet Campbell for more information or to place an order.

PLEASE donate your empty computer printer cartridges and old cell phones to our group.  

 Help the environment and support Scleroderma research!

For more information, please contact:

Gerald Shauf   Ph: 306-634-3433

Ken and Louise Goulet   Ph: 306-584-1950.

All money goes towards research in Canada.  Ask your family and friends to donate their computer printer cartridges and old cell phones.

BREAKING NEWS FROM USA

On behalf of the Scleroderma Foundation’s National Board of Directors, it’s my pleasure to share BREAKING NEWS in the field of scleroderma research, which was embargoed until this afternoon.

In a report published today, May 30, 2012, in Science Translational MedicineCarol Feghali-Bostwick, Ph.D., and her research team at theUniversity ofPittsburgh report on the identification of a small peptide, a stretch of amino acids representing a small piece of a protein that can stop fibrosis in mice. Interestingly, this peptide, called E4, also blocked fibrosis when given a few days after fibrosis was triggered in mouse skin or lung. E4 is derived from a protein known as endostatin, which is a cleavage product of collagen XVIII.

According to Dr. Feghali-Bostwick, many agents that have been shown to prevent fibrosis in mice have failed in clinical trials when humans with the disease were found to have a different response from the mouse. To determine if their new peptide is relevant for human disease, the investigators tested it in human skin maintained in the laboratory and showed that the peptide was effective at reducing fibrosis in human skin. This suggests that the peptide has a high likelihood of being effective in humans with fibrosis.

Dr. Feghali-Bostwick said that the discovery of E4 was a serendipitous one. The investigators identified E4 when looking for agents that promote fibrosis. They did not anticipate that of the agents they were testing as inducers of fibrosis, one would surprisingly block fibrosis. As Louis Pasteur said, “chance favors the prepared mind.”

Lung fibrosis is currently the number one cause of death in patients with scleroderma. Identification of a molecule that stops fibrosis in both skin and lung brings us closer to a possible treatment for fibrosis. Currently, the only therapy for lung fibrosis is transplantation.

Dr. Feghali-Bostwick is an Assistant Professor of Medicine and Pathology in the Division of Pulmonary, Allergy, and Critical Care at the University o fPittsburgh’s Department of Medicine, as well as Co-Director of the University’sSclerodermaCenter.

She also serves as the Vice Chair of the Scleroderma Foundation Board of Directors and Chair of the Foundation’s Research Committee.

Early in her career, and prior to her involvement on the Foundation’s Board, Dr. Feghali-Bostwick was supported by the Scleroderma Foundation. She was the recipient of a Scleroderma Foundation New Investigator grant to study twins with scleroderma in 1999.

The current findings bring us closer to finding treatments for scleroderma and, hopefully a cure. They also emphasize the importance of supporting research on scleroderma and related diseases.

John Varga, M.D., Chair of the Foundation’s Medical Advisory Board commented that these are exciting findings but cautions that we need to remember that the new compound is not the cure, but a piece of the puzzle that will eventually lead us to find the cure.

Please join us in congratulating Dr. Feghali-Bostwick and her team for this exciting breakthrough in fibrosis research.

To read the Foundation’s press release on this discovery, follow the link below:

http://www.scleroderma.org/media/Press_%20Releases/2012/fibrosis-news.shtm

To read the full article in Science Translational Medicine, please follow this link:

http://stm.sciencemag.org/content/4/136/136ra71

Sincerely,

Robert J. Riggs

Chief Executive Officer

Scleroderma Foundation, Inc.

300 Rosewood Drive, Suite 105

Danvers, Massachusetts 01923 USA

800.722.HOPE (4673), ext. 251

Fax: 978.463.5809

FIND US ONLINE:

www.scleroderma.org

www.facebook.com/sclerodermaUS

www.twitter.com/scleroderma

 

Louise’s son and daughter-in-law are both scientists.  Louise asked them for clarification.  This is his reply:

“A peptide is like a small protein (actually a part of a protein).  Collagens are proteins. A cleavage product of collagen XVIII means it is probably a portion of the collagen XVIII.

I don’t know how close something like this is to becoming a therapy. Since there is no treatment for lung fibrosis, if it got into clinical trials, it would likely be fast tracked by the FDA, but that testing and approval process would still take years.
I do not know if the University has a mandate or funding to take things through the FDA. They may need a partner in industry.  It is promising, but I would not expect to see a product on the market for at least 5 years. That’s just my thoughts. I could be wrong.”

Defeat is not bitter unless you swallow it!
The Mayonnaise Jar and 2 Beer

When things in your lives seem almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar and the 2 beer.
A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls.

He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous “yes.”

The professor then produced two bottles of beer from under the table and poured the entire contents into the jar effectively filling the
empty space between the sand. The students laughed.

“Now,” said the professor as the laughter subsided, “I want you to recognise that this jar represents your life. The golf balls are the
important things–your family, your children, your health, your friends and your favourite passions—and if everything else was lost and only
they remained, your life would still be full.

The pebbles are the other things that matter like your job, your house and your car.

The sand is everything else—the small stuff. “If you put the sand into the jar first,” he continued, “there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.

“Pay attention to the things that are critical to your happiness.  Play with your children. Take time to get medical check-ups. Take your spouse out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first—the things that really matter. Set your priorities. The rest is just sand.”

One of the students raised her hand and inquired what the beer represented. The professor smiled. “I’m glad you asked.  It just goes to show you that no matter how full your life may seem, there’s always room for a couple of beer with a friend.”

Bushwakker’s Fundraiser & Awareness

Financial Statement:

INCOME
125 Tickets @$25.00

$3125.00

50/50

$420.00

Total

$3545.00

EXPENSES
125 tickets @ $14.65

$1831.25

50/50

$210.00

Door prize

$50.00

Lottery licence

$5.00

Total

$2096.25

PROFIT

$1448.75


In addition to the above, donations in the amount of $710.00 were received as a result of the awareness campaign. 

COUPLE SEX:   An 8-year-old girl went to her grandfather, who was working in the yard and asked him, “Grampa, what is couple sex?”

 

The grandfather was surprised that she would ask such a question, but decided that if she’s old enough to ask the question, then she’s old enough to get a straight answer.

Steeling himself to leave nothing out, he proceeded to tell her all about human reproduction and the joys and responsibilities of intercourse.

When he finished explaining, the little girl was looking at him with her mouth hanging open, eyes wide in amazement.

Seeing the look on her face, the grandfather asked her, “Why did you ask this question, honey?”

The little girl replied, “Grandma says that dinner will be ready in just a couple secs.”

Thanks to Dave and Monique Sereda who contributed the following puzzle.  The solution is found on page 11.

SASK Crossword Puzzle #1

 

1 2
3 4
5 6 7
8 9
10
11

 

 

Across Down
4. Skin tightening cause 1. SASKmeetings per year
5. Fundraising main purpose 2. “Hard skin”
7. National Organisation initials 3. Opposite of acute
8. Fingertip problem 6. Limited Scleroderma syndrome
10. Scleroderma awareness month 7. Provincial Organisation initials
11. Usual first symptom 9. SASKpresident

What’s Up Doc?

  1. What would be the recommended “oral health check list” for a patient living with scleroderma?

A.  Oral Health Check List For Patients With Scleroderma from Dr. David Leader, Associate Clinical Professor, Tufts University School of Dental Medicine.

Patients with scleroderma have oral health issues particular to the illness.  Because scleroderma is a chronic disease, oral health issues can be life-long.  Long standing oral health conditions may become worse over time.  Treatments may not be curative and only improve the patient’s condition.

Xerostomia (dry mouth) is very common in scleroderma.  This is due to the disease itself or the side effects of medication.  Microstomia (small mouth) is a common feature of scleroderma.  Home care (brushing and flossing) may be complicated by microstomia and sclerodactyly (tightening of

The Scleroderma Society of Canada & The Canadian Scleroderma Research Group

Annual Conference Presented by The Scleroderma Association of British Columbia (SABC)

Sept. 28/29, 2012 Hilton Vancouver Metrotown, 6083 McKay Ave., Burnaby, BC

Workshops are offered on the afternoon of Sept. 28th and a full program of speakers/workshops on Sept. 29th.  Featured speakers from BC and acrossCanadaare experts in their chosen fields – topics for Lupus friends too!

Attendance Fee: $45 for registration received by Aug. 31. ** $50 for registration by deadline, Sept. 23.

(Registration includes a dessert reception Friday evening, breakfast and lunch on Saturday the 29th)

Accommodation: $129 per night (+tax). This preferred rate for conference bookings is available to Aug. 31.

Choose a king room, sleeps up to 2, or a double queen room, sleeps up to 4 at no extra charge.

(An extension stay of 3 days on either side of the conference is offered at no rate increase)

Hotel Bookings: http://www.sclerodermabc.ca/2012_joint_conference.html  (604) 438-1200 Toll free 1-888-744-5866  (Quote ‘2012 Scleroderma Conference’ to ensure the preferred rate)

SABC Billeting Please notify SABC office 604-940-9343 / 888- 940-9343 if you require billeting

& Registration: Registration at SABC office is required by Sept. 23rd for all attendees, billeting or not.

Sept. 28:   10:00 -12:30 2 hr Vancouver City Tour (English) $10.00 prepaid includes driver tip

                  11:00 – 2:00 Registrations

                  2:00 – 2:10 “Welcome to BC” followed by “Welcome to the SSC Conference”

                  2:10 SSC Annual General Meeting – Adopt Agenda/Minutes, Treasurer/s Report, Elections

                    2:30 – 3:30 Patient Survey follow-up & $1.5M SPIN-off – includes question period Maureen Sauve, SSC President & Dr. Brett Thombs, psychologist.

                   3:30 – 4:30 Lung issues & Treatment Options – includes question period Dr. Jim Dunne, rheumatologist & Dr. Pearce Wilcox, respirologist

                   4:30 Tea, coffee, juice and no-host beer & wine gabfest

                   6:00 Optional no-host pre-registered dinner in theCrystalMall area

                   7:30 Free desserts and poster viewing with students &/or mentors present

 Sept. 29:   8:30 – 9:45 Registrations and Breakfast Buffet

                   10:00 Scleroderma Symptom Management. Pain & Fatigue – Why & What Can Be Done

Dr. Janet Pope, Rheumatologist. – includes question period

                   10:30- 11:30Tea and coffee, juices available

                   11:00 Scleroderma Research Developments & Highlights: Dr. Murray Baron, Director, CSRG

Includes Q&A session with Maureen Sauve, Murray Baron, Janet Pope & Peter Docherty

                   12:00 Joint Lunch Buffet /Doctors, Nurses & patients. (Poster viewing available 12:00 – 1:30)

                   1:30 & 2:30 Breakout Sessions, A,B,C & D – with question period incorporated

A The Scleroderma Patient-centred Intervention Network (SPIN)

           Managing Depression and Body Image Concerns: Dr. Brett Thombs and Lisa Jewett

Personalized Medicine in Scleroderma : Dr. Marvin Fritzler, CSRG Collaborator

Make-up Tricks for Scleroderma: Cosmetologist

Dental Issues in Scleroderma & Research Results: Dr. Mervyn Gornitsky, DDS

                   3:30 Plenary session: Kudos; Invitation to 2013 National Conference; Adieus

                   4:00 Adjournment

SASK Crossword Puzzle #1

Solution

 

1T

2S

W

C

3C

4C

O

L

L

A

G

E

N

H

E

5R

E

S

E

A

R

C

H

6C

7S

S

C

O

O

R

A

N

D

8U

9

L

C

E

R

S

I

10J

U

N

E

O

S

K

C

R

U

T

M

I

11R

A

Y

N

A

U

D

S

E

What’s Up Doc? (continued from page 9)

… the skin on the hands and fingers).  Gastro-esophageal reflux disease (GERD) is common in scleroderma.  Acidic stomach contents will cause tooth decay and erosion.

Choose a dentist who is patient.  The dentist must either be familiar with scleroderma or be willing to learn about the condition.

    • Scleroderma patients should return to the dentist or dental hygienist for check-ups every 3 months.  Annual x-ray exams are recommended.  (Dress warmly for dental appointments to prevent Raynaud’s Syndrome flare ups during dental appointments.
    • The dentist should test the patient for xerostomia (dry mouth) regularly and record the results.  Treat if necessary.
    • Patients with sclerodactyly and microstomia should speak with the dentist or dental hygienist about strategies and tools for improving brushing and flossing.
    • The use of professionally applied fluoride and prescription fluoride is essential.
    • Perform daily exercise to maintain and increase maximum jaw and mouth opening.

Reprinted from “Scleroderma Voice – Winter 2010” published by the Scleroderma Foundation (USA)

Very little is needed to make a happy life; it is all within yourself, in your way of thinking.

Thanks to Dave and Monique for the following:

SASKWord Search 1

R  B  K  E  W  K  T  N  S  K  H  I  K  T  X

L  C  O  N  D  X  S  O  Y  I  O  U  O  U  B

S  O  J  U  X  W  I  I  S  D  F  Y  F  J  A

P  L  C  M  O  C  G  T  T  N  H  R  S  A  C

J  L  U  M  S  I  O  A  E  E  X  E  S  M  J

R  A  W  I  I  N  L  C  M  Y  R  C  E  R  X

A  G  H  O  Q  O  O  I  I  S  S  L  N  E  W

Y  E  V  T  N  R  T  D  C  K  X  U  E  D  D

N  N  C  U  L  H  A  E  Y  P  P  Q  R  O  W

A  P  O  A  F  C  M  M  R  O  J  A  A  R  L

U  S  L  T  I  P  U  P  F  S  R  U  W  E  O

D  P  D  C  D  U  E  S  U  A  G  O  A  L  P

S  T  O  O  Y  U  H  I  K  E  K  N  U  C  X

A  Z  Q  M  J  Y  R  D  U  I  J  R  U  S  X

V  H  Q  L  M  P  K  T  E  C  N  Z  F  L  Y

autoimmune

medication

awareness

Raynauds

chronic

rheumatologist

cold

Scleroderma

collagen

skin

kidneys

systemic

lungs

ulcer

FOXGLOVES are designed for tactile sensitivity and dexterity. FOXGLOVES embrace your hands and fingers with a snug, supportive fit so comfortable you won’t want to take them off! The blend of SUPPLEX® nylon and LYCRA® elastane provides the look and feel of cotton with the strength, water resistance and performance of nylon. FOXGLOVES contain NO LATEX. They are supple and breathable. This easy care fabric wicks moisture away from skin and prevents soil from penetrating, keeping hands, nails and cuticles clean. The longer wrist eliminates the need for a separate clasp and protects against soil and scratches. Machine wash or rinse under the tap when you are done and FOXGLOVES will be fresh and clean, ready for you to wear again and again.

Foxgloves’ supple support lends relief to many people with Raynaud’s, neuropathy and arthritis.  Available in sizes Small, Medium and Large.  Prices $20.00 – $28.00 per pair.  1-888-322-4450 or www.foxglovesinc.com.  (This product was recommended by members but are not necessarily suitable for everyone.)

Fall 2011

 

Scleroderma Association of Saskatchewan

Newsletter – Fall 2011 

Issue #47

President/Fundraising:

Louise Goulet: Phone: 584-1950

Vice President:

Shirley Gillander: Phone: 525-6377

Recording Secretary:

Olga Sereda: Phone: 693-1936

Corresponding Secretary:

Norma Redman: Phone: 532-4449

Newsletter co-Editor:

Janet Campbell: Phone: 757-0962

janet.campbell@uregina.ca

Treasurer/Newsletter co-Editor:    

Gerald Shauf: Phone: 634-3433

465 WillowBay

Estevan, Sask.  S4A 2G3

glshauf@sasktel.net

CALENDAR OF EVENTS

MEMBERSHIP FEES:  If you are receiving this newsletter by mail, please check your mailing label to see what your membership status is.  If it says PD12, you are paid for 2012. If it has X, your 2012 membership is valid as a result of a donation.  If there is nothing after your name, you have not paid for your 2012 membership.  Please remit $20.00 fees to SASK c/o Gerald Shauf at the above address if you have not already paid for 2012.  If you are receiving this newsletter by email and don’t know whether you have paid or not, please contact me.  Income tax receipts will be issued for memberships and all donations. Thank you for your support.

SPRING 2012 MEETING:

The spring meeting of the Scleroderma Association of Saskatchewan will be on Saturday April 21, 2012 at the Wascana Rehabilitation Centre.

DONATIONS:  The Scleroderma Association of Saskatchewan has received some notable donations that need to be recognised. In 2010, as a memorial donation to Diane Krafchuk, late of Estevan,SK, The Fraternal Order of Eagles – Auxiliary #4126 in Regina made a donation of $410.00.  This year, they donated $395.40.

A number of years ago, employees of SaskCentral, Credit Union Deposit Guarantee Corporation and Concentra Financial (Reginalocation) implemented a corporate-wide initiative to raise funds for charities.  In 2010, the employees donated $472, which was then matched by SaskCentral for a total of $944.  This year, the employees donated $440, which was matched by SaskCentral for a total of $880.00.

In 1950, SaskTel employees and SaskTel formed a partnership called TelCare.  The employees donate funds, which are 50% matched by SaskTel.  Since 2001, TelCare has donated $1556.00 and SaskTel has donated 50% of that amount for a total of $778.

The Regina United Wayand Donor’s Choice from Muenster, Gainsborough, Broadview and Edamhave collected donations, which have been sent to us for several years. For the past two years, Dr. Markland has held an annual Garden show.  Last year, she raised $727.00 and this year, donations in the amount of $475.00 were received.  Dr. Markland also donated $54.00, which matched the sale of Scleroderma pins and magnets.

In 2010, the Taoist Tai Chi Society of Canada–Regina, Branch, held a Chinese New Year’s celebration banquet and donated $1800 to SASK. Several years ago, when Linda and I were vacationing at our daughter’s home in Chandler, AZ (a city near Phoenix), one of Linda’s on-line Scleroderma/Sjogren’s friends, JoAnn Snider, drove from Hemet, CA (over 5-hour drive) to meet and have lunch with us.  Since Linda’s passing, she has sent $100 every year as a memorial to Linda.

As a memorial to Linda, I have donated $1000 per year to SASK for the past 5 years.

I would also like to note that several of our members have made donations to enable us to promote research into Scleroderma. 

DISCLAIMER

The Scleroderma Association of Saskatchewan does not endorse any drugs or treatment. We wish only to keep you informed. Check any treatment with your own physician.

 Christmas is not what you get but whom you are with.

 Saskatchewan Parking Program for the Disabled:    Ph: (306) 374-4448

Handicapped parking permits now cost $10.00. Successful applicants receive parking placards allowing them to park in designated areas for handicapped. Applications are available at any branch of Saskatchewan Abilities, or any motor vehicle issuing office.  Ask your doctor if you qualify. Try to look at getting the placard as a way to make your life easier.

In the eyes of children, we find the joy of Christmas.  In their hearts, we find its meaning.There is no greater gift at Christmas than to have everything you want before you open the gifts.

Perhaps the best Christmas decoration is being wreathed in smiles.

President’s Message

Today is the middle of November and it looks like ‘Old Man Winter’ is here to stay. For those who suffer during cold weather that is not good news.   I think we should hold a meeting in January – on beach chairs, with our feet covered in warm sand and ocean waves kissing our toes.  How about Hawaii?

Our fall meeting was on October 15th with 16 members and guests in attendance.  We welcomed Doreen, a new member who travelled all the way from LaRonge. Dr. P. C. Patel was our guest speaker.   He spoke of the effects scleroderma has on different organs in our body with particular attention to the lungs.

The Scleroderma Society of Canada Annual Conference was held in Quebec City this year.   Shirley, Roberta and I attended this event at the end of October.  We were able to attend several workshops with presenters that have worked in scleroderma research or medical doctors, particularly rheumatologists that have cared for scleroderma patients.  We hope to share gathered information at our April meeting.

I have included a letter from Dr. Murray Baron, M.D. who was instrumental in starting the Canadian Scleroderma Research Group.  If you have not joined this registry and wish to do so, please contact me at (306) 584-1950.  I encourage all those with scleroderma to do so.   I believe we must be our own advocates in seeking ways to help ourselves and strive to learn as much about this disease as we can.

I wish you many Blessings and Joy during the Holiday Season.  Be sure to rest, relax and take time for yourself.   Keep warm and stay healthy.

Louise

CSRG  GRCS

Canadian Scleroderma Research Group –Groupe de recherche canadien sur la sclérodermie

October 28, 2011

Dear Scleroderma Society of CanadaAnnual Conference Attendees,

Once again, the Canadian Scleroderma Research Group (CSRG) will be holding their scientific meeting alongside the meeting of the Scleroderma Society of Canada.

Our goals have always been to seek answers for you.  We have approached the problem of scleroderma, both from a clinical and a laboratory approach.  Since we started in 2004, we have enrolled over 1,350 patients in the CSRG.  We have trained many students and hopefully have planted seeds that will grow into new scleroderma researchers in the future.  We have published numerous scientific papers in respected journals and presented dozens of papers at important international scientific meetings.  Our Group has become one of the most important players in the world in this field of research.  The generous support of the patient organizations such as Scleroderma Society of Canada and all its provincial Chapters, Scleroderma Ontario, Sclérodermie Québec & Cure Scleroderma Foundation have been essential ingredients of our success.

We have several laboratories working on the very basic aspects of scleroderma in an attempt to unravel its causes and hopefully find a cure based on a true understanding of the disease.  At the same time, we recognize that such a cure may be years away and we are also working hard on trying to find ways to help patients better cope with this illness.

In particular, the Scleroderma Society of Canada has been a key player in our development.  They were there from the very beginning.  Without this organization’s help and support we never would have been able to reach the goals that we have already achieved.

And of course without the help of the patients who have participated in the CSRG projects we also would still be at square one.  Instead, with your help we have formed an incredibly productive and one-of-a-kind partnership.

As always, we are very happy to be able to have our meeting alongside yours and to be able to share with you some of the work that we have done in the past year.

Enjoy the conference!

Dr. Murray Baron, M.D.

CSRG Director & Division of Rheumatology Chief

SMBD – JewishGeneralHospital

3755 Cóte Ste-Catherine Road, Room A725,Montreal(QC),

H3T 1E2,CANADAFax: 514-340-7906; Tel 514-340-8231

Minutes of October 15, 2011 Meeting

The fall meeting of the Scleroderma Association of Sask. was held at the Wascana Rehabilitation Centre in Regina on Oct. 15, 2011 with 16 in attendance.

President Louise Goulet called the meeting to order at 10:25 a.m. and asked for brief introductions around the table.

The agenda was adopted with two additions, to discuss where to donate our funds this year, and what to give as an honorarium to our guest speaker.  Louise Goulet declared the minutes of our spring meeting adopted as read.

In Business arising from the minutes, the Scleroderma banner was repaired and displayed in Regina in July instead of June.  It is likely that most people who see the banner don’t know what Scleroderma is, and as it faces east, it probably isn’t as easily seen now that 11th Avenue is a two way street.  No bill for the display has been received to date from the City of Regina.

No one has contacted Global TV about interviewing someone from our group.  Other possibilities for getting some exposure are by Public Service Announcements on CKCK, Access TV and perhaps the Leader Post.  Roberta Nichol will take charge of notifying these outlets of our meetings.

There has been nothing definite re: collaborating with the Lupus Society in fund raising efforts.  The Scleroderma Society of Canada has not decided on use of the sunflower as a national symbol.  Ovarian Cancer Canada uses the sunflower as its symbol.

The Treasurer’s report shows a bank balance of $20,038.21.  In response to a question, Gerald Shauf explained why we have several accounts.  Moved by Gerald Shauf, seconded by Joyce Kellington that the report be adopted as printed.  Carried.

There was no correspondence.

In new business, the subject of how we can better spread awareness about Scleroderma was discussed.  Members are finding that even medical personnel know nothing about our disease.  Dr. Markland will be asked if she could speak to medical students about Scleroderma if she is not already doing so.  It was suggested that we could take part in volunteer fairs.

Suggestions for disbursement of our funds were to donate to CSRG and SSC.  After some discussion it was moved by Ken Goulet, seconded by Andy Sereda that we donate $10,000.00 to CSRG.  Carried.

Louise Goulet asked us to respond to several questions from SSC.

#1 – What are the needs for Scleroderma patients in each province?  We need medical people who are more informed and also more specialists.

#2 – What is the role of SSC?  They must be advocates in charge of awareness; they must lobby for more funding for research; they should reinstate the national newsletter; they should have someone to co-ordinate provincial efforts acrossCanada.

#3 – What is the role of board members?  They should be responsible for information sharing from both sides – national and provincial.

#4 – What should the relationship between SSC and support groups look like?  SSC should co-ordinate information through newsletters on what kinds of fundraisers are occurring and what groups do to spread awareness.

The 2011 National Conference is in Quebec Cityon Oct 28th and 29th at the Hilton hotel.  Specialists will speak on topics such as lung complications, various therapies and CSRG reports.

Janet Campbell attended Dr. Markland’s Garden Show in July.  Attendance was disappointing, mostly Lupus Society members as it was a joint fund raiser this year.  We received $445 from Dr. Markland and Janet collected another $30 there.

Members expressed appreciation for our newsletter composed and printed by Janet Campbell and Gerald Shauf.  Volunteers will contact people on the membership list and ask if they wish to receive the newsletter.  There are over 100 on the list, 41 who are paid up members, and it is costly to mail to those who aren’t interested.

The meeting adjourned for lunch at 11:50 a.m. and reconvened at 1 p.m.

Fund raising possibilities for 2012 were discussed, such as a Steak Night perhaps with a 50-50 draw and/or Silent Auction; Pizza night; Walkathon.  A decision will be made at the April 2012 meeting.  Regarding a Walkathon, one possibility would be to have a nation-wide one with all provinces having the same T-shirts, perhaps with the Arthritis Society or with corporate sponsorship of some kind though it would require a lot of work.

During sharing time, a member commented on experiencing a lot of fatigue and wondered if others are affected to the same extent.  Fatigue appears to be common but not necessarily severe.  Another lady suffers severe pain especially if she bumps into something, but finds it is well controlled by prescribed narcotics.  Other pain control options were discussed.  Another lady wanted other’s opinions on healing after surgery so as to know what to expect when she has surgery.  The antibiotic ointment Bactroban (also known as Mupirocin) seems to work well for healing of finger ulcers.

Guest speaker, Dr. Patel arrived and was introduced by Louise Goulet.  He specializes in Respiratory Diseases, Internal Medicine and Sleep Disorders and spoke on how Scleroderma affects the lungs and Pulmonary Arterial Hypertension.  He said Scleroderma has many effects on the lungs but not all patients suffer all effects.  The main concerns are recurrent pneumonia and bronchitis, and impaired swallowing ability leading to aspiration.  The main symptom in these is a cough.  As the disease progresses there is shortness of breath because of scarring, leading to less lung capacity.  If the esophagus is affected by Scleroderma, swallowing is impaired perhaps resulting in aspiration pneumonia.  Scleroderma’s effects on the lungs can be impacted by allergies, anemia and co-existing conditions involving the heart, kidneys or liver.

Basic assessment of the patient includes blood-work, kidney function tests and chest X-ray.  Other tests that might be done are CT Scan, Bronchoscopy and Lung Biopsy.  What these tests show is whether there is Infiltrate (scarring or fibrosis from Scleroderma) or Infection.  Treatment depends on the patient’s condition.  If there is inflammation and not infection, steroids may be helpful, or newer drugs – Cytoxan and Cellcept which impair replication of cells.

Recurrent infections can result in bronchiolitis – inflammation of bronchioles.  If the lining of the lungs, the pleura is affected by Scleroderma, excess fluid may occur and needs to be drained off, but in this case, there should be no inflammation or infection present.

To determine the extent of Pulmonary Arterial Hypertension, blood pressure in the right heart which directs blood to the lungs is recorded.  This can be done indirectly by Chest X-ray and ECG to assess pulmonary artery diameter.  Direct measurement is by pulmonary artery catheterization.

PAH eventually causes shortness of breath to the extent that the patient can’t carry out normal activities of daily living such as dressing oneself, etc.  Diagnosis is made from pulmonary function tests, echocardiogram, history and X-ray.  Therapy includes Warfarin to prevent clots forming in smaller blood vessels.  Follow-up and reassessments are important.  Keeping active, especially walking or swimming is highly recommended.  Dr. Patel answered many questions after which he was thanked by Janet Campbell.  He continued talking with members during a coffee break.

Gerald Shauf reported that our old photocopier needs servicing again.  After some discussion it was decided that we should purchase a new printer/copier that will meet our needs.  Our organization has no web-site at present.  Gerald Shauf offered to approach a designer through his son-in-law that may do this complimentary with only a small charge for renting space on a server.

Our next meeting is booked for April 21, 2012 in the Wascana Rehab boardroom where we formerly met.

We will continue having coffee and snacks available before the meeting at 10 a.m. with Roberta Nichol and Joyce Kellington bringing the snacks for this meeting.

Norma Redmond showed a Hazelwood necklace, which she said, has helped her heartburn problem.  It is available at www.tinyteethers.com.  Janet Campbell cautioned that magnetic bracelets can wreck computers if worn when using them.  A product called Manuka honey + 20 has been found helpful in healing finger ulcers.

Gerald Shauf moved that the meeting be adjourned at 3 p.m.

Andrew Campbell offered to help members produce video testimonials for use on Youtube.  His email address is: acampbell500@gmail.com

Christmas is a time when you get homesick – even when you are home!

He, who has not Christmas in his heart, will never find it under a tree.

SASK Fundraising & Awareness Items:

 We have the following available:

Floral note cards:

There are 8 different floral designs in each package. Scleroderma contact information is printed on the back of each note card.  They are very pretty cards to use or give as gifts.  The cost for a package of 8 notes and envelopes is $6.00.

Lapel pins:  The attractive lapel pins are dark blue with Scleroderma printed on them in white letters.  The cost is $3.00

Magnetic ribbons. These are similar to the lapel pins.  They are 8 inches x 2.5 inches and are $2.00 each.  Put them on your car or your refrigerator.

Please contact Gerald Shauf or Janet Campbell for more information or to place an order.

PLEASE donate your empty computer printer cartridges and old cell phones to our group.  

 Help the environment and support Scleroderma research!

For more information, please contact:

Gerald Shauf   Ph: 306-634-3433

Ken and Louise Goulet   Ph: 306-584-1950.

All money goes towards research in Canada.  Ask your family and friends to donate their computer printer cartridges and old cell phones.

CSRG (Canadian Scleroderma Research Group) study:

If you haven’t already joined, your participation is very important for Scleroderma research.

All Saskatchewan study patients must see:

Dr. Janet Markland – Rheumatologist

#302 Midtown Medical Centre

39 – 23rd Street East

Saskatoon, SK.   S7K 0H6

Phone: (306) 244-1424

Phone and make an appointment with Dr. Markland and let her know you would like to join the study. You will continue to be followed by your own physicians and see Dr. Markland only for this research study.  Dr. Markland will do a thorough examination plus order necessary tests. Test results will be used from any recent tests already done by your own physicians. Results from study tests will be made available to your own physicians. This is also a wonderful opportunity to get a second opinion.  Since 2004 there have been 86 registered, with 65 active participants.  Once a year at each study visit you will be offered $25.00 to help cover travel and parking expenses.

Useful Web Sites:

Scleroderma Society of Canada

http://www.scleroderma.ca

CSRG – Canadian Scleroderma Research Group

http://www.csrg-grcs.ca

Arthritis Society    Ph:1-800-321-1433

www.arthritis.ca

United Scleroderma Foundation (USA)

http://www.scleroderma.org

Scleroderma Research Foundation (USA)

http://www.srfcure.org

A little smile, a word of cheer,

A bit of love from someone near,

A little gift from one held dear,

Best wishes for the coming year.

These make a Merry Christmas!

You Are Your Own Best Advocate!

By Michelle Mayer, R.N., M.PH., Ph.D.

One would think that I would be well qualified to navigate the healthcare system. I began my professional career as a nurse and later became a Ph.D.-trained health services researcher. I am also married to a physician. However, despite all of my and my husband’s training and experience, it has been incredibly hard to find my way through the maze. From scheduling appointments to pay­ing for services, the process of obtaining high-quality medical care is fraught with difficulties.

In my opinion, this process is even more difficult for persons afflicted with relatively rare and incurable diseases like scleroderma.

A Struggle from the Start

Without a doubt, my story is like those of many other scleroderma patients. Despite having diagnosed myself with scleroderma one month after the onset of my symptoms, it took 14 months and three doctors to confirm the diagnosis.

Several scleroderma “experts” cautioned me against attempting a pregnancy, although the small existing medical literature had already demonstrated that the majority of scleroderma pregnancies have a good outcome.

And, of course, I have endured all the usual inconveniences and frustrations: long waits to get appointments, followed by long waits in the patient waiting area; cold patient rooms; poor pain control, especially after postoperative procedures; and providers who didn’t look me in the eye or shake my hand, let alone listen to my questions or understand my needs.

Not all my experiences with the healthcare system have been negative, but many of them have.

Chronic Diseases Fall Through the Cracks

Much of the system is oriented toward treat­ing a disease rather than a patient. For those among us with incurable diseases that affect many aspects of our lives, this “curative” focus is not helpful in our patient care.

I think that many physicians, faced with an incurable illness like scleroderma, recoil in defeat. They fail to realize how helpful they can be in preventing or minimizing complications and disability, preserving function, and eliminating pain.

First, Properly Orient Your Thinking

I have often wondered how people without the benefit of clinical or research training navigate this difficult system. So I have developed some tips to help you get the most out of your care.

Begin by understanding that scleroderma has the potential to affect your life negatively in two ways:

I) cutting it short; and

2) making it less enjoyable.

Therefore, until a cure for scleroderma is discovered, your medical care should focus on lengthening your life and making your life more enjoyable. Pain control and physical therapy – that is, dealing with the disease’s impact – deserve as much of your attention and investment as treating the disease itself.

Practical Tips from My Experience

Now that you understand what your focus needs to be, decide what is important to you. What makes your life worthwhile? What can you not live without? Your medical care should be organized in such a way as to pre­serve your ability to live a fulfilling life according to your own standards.

For example, I wanted to have children in spite of my scleroderma, I found that many physicians failed to appreciate the importance of this issue in my life and, consequently, dismissed my needs inappropriately.

1. Learn all you can about scleroderma.

Inform yourself about the disease, existing effective treatments, ongoing research trials, symptom management, etc. The Internet can be a wonderful resource, as can other patients with scleroderma. You can also access the medical literature through the National Library of Medicine’s web site at www.ncbi.nlm.nih.gov/entrez/query.fcgi.

2. Learn all you can about your health insurance. Whenever possible, choose your health insurance carefully. Obtain the most comprehensive coverage that you can afford. There are many issues to consider, such as:

What physicians are available to you in-­network and out-of-network?

Can you choose your own provider’?

Does your insurance cover ancillary serv­ices, such as physical therapy?

What will be your deductible, co-insur­ance rate, and out-of-pocket maximum?

Find qualified, knowledgeable physicians who perceive themselves as your “partners” in improving your health. Your physicians need to view you holistically – that is, as a whole person, not just as a scleroderma patient. They need to appreciate how sclero­derma affects your life and demonstrate a willingness to help you minimize its negative consequences. Your physicians should treat you with dignity and be willing to answer your questions in a nonjudgmental manner. If you’re not comfortable with your physicians, find new ones.

3. Ask for what you need. Redefine your concept of being a “good” patient. You are your own best advocate. Remember, your doctor works for you.

Do not be afraid to assert yourself and ask for what you need. This applies to even the simplest procedures. For example, blood draws are painful for patients with scleroder­ma. Ask your physician to describe EMLA or Elarnax, anesthetic creams that can be applied to the site one-half hour before blood draws to numb the area. You won’t even feel the blood draw.

Also, ask the phlebotomist to use a butter­fly needle, which is smaller than the needles they typically use.

4. Manage your pain effectively. Do not live in pain. There are a variety of pain med­ications available to treat everything from joint pain to nerve pain. You should not have to suffer. If your primary care provider or rheumatologist is not able to or is uncomfortable with managing your pain, ask for a referral to a pain specialist.

5. Screen for scleroderma-related complications. Work with your provider to develop a schedule of screening tests to ensure that scleroderma-related complica­tions, such as renal involvement, pulmonary fibrosis, and hypertension, are found as early as possible. Do not wait for symptoms.

6. Use therapies to minimize scleroderma’s impact. Use ancillary services, such as physical and occupational therapy and biofeedback to minimize the effects of the disease and prevent disability. Do not wait for your doctor to suggest these services. Ask for them at the time of diagnosis or soon thereafter.

7.  Read your medical bills carefully. Read your medical bills because they are often filled with errors. Do not pay bills until you’ve reviewed them carefully and com­pared them to the Explanation of Benefit statements you received from your insurer.

Empower Yourself to Lead the Life You Want!

I decided early on in my disease that sclero­derma might shorten my life, but it did not have to run it. I have managed my healthcare in such a way as to preserve as much normalcy as possible.

At times it has been difficult to find like-minded providers who would allow me to manage my care, but I have been able to assemble a cadre of doctors comfortable with this arrangement.

Despite having diffuse scleroderma with pulmonary fibrosis, I live a very fulfilling life that resembles the one I would have wanted had I never developed scleroderma: I have two healthy toddlers, work part-time, exer­cise daily, travel, garden and sew.

Had I not been assertive in dealing with the healthcare system, I feel certain that my life would be very different.

Taking control of one’s health care can be an exhausting process. If you are too sick to fight for yourself, find a family member or friend willing to do it for you. Know your needs and goals, find a provider willing to accommodate them, and be persistent.

Reprinted from Scleroderma Voice 2002 #3.  Voice is a publication of the USA Scleroderma Foundation.

THE DOCTOR IS IN

 By Philip Clements, M.D., M.PH., Professor of Medicine Division of Rheumatology, UCLA School of Medicine

 The following questions were asked of Dr. Philip Clements at the New England Chapter’s Patient Education Seminar. When time ran short, Dr. Clements graciously agreed to answer them in writing. This infor­motion is provided courtesy of Dr. Clements and Marie Coyle, President of the New England Chapter

 Q.  At least two years before I had any other symptoms of scleroderma, I had numbing of the hands while sleeping. Was this the start of my scleroderma?

 A.  About 5-10% of people with scleroderma develop carpal tunnel syndrome as one of the early scleroderma-related events. Generally, the numbness is confined to the thumb and index and middle fingers. There may also be pain in the hands and up the forearms. Characteristically, the symptoms wake people at night.

Carpal tunnel syndrome is a fairly com­mon problem in the general population but is more prevalent in persons with rheumatic disorders. Only if the skin becomes thickened and there arc other evidences of scleroderma can we say that this was related to scleroder­ma and could have been a heralding event for scleroderma.

Q.  Can you explain the pros and cons of taking methotrexate as a treatment for sclero­derma?

A.  Methotrexate is a very effective medica­tion in the treatment of rheumatoid arthritis. There are now two randomized controlled trials of methotrexate against placebo, which together examined 100 patients with diffuse scleroderma (widespread skin thickening) of recent onset.

Both trials came to similar conclusions: there were suggestions (or trends) that patients taking methotrexate had more soften­ing of skin at the end of a year than those who were taking the placebo, and that the physician and the patient assessments of overall course favored patients taking methotrexate over those taking placebo.

This suggests that methotrexate may bene­fit patients with early diffuse scleroderma.

Q.  What about Enbrel® versus methotrex­ate as a treatment?

A.  Dr. Michael Ellman inChicago per­formed a one-year open study in which ten patients with scleroderma were treated with Enbrel. His results were not overwhelming that Enbrel was effective.

There has been no head-to-head compari­son of Enbrel versus methotrexate.

If I were to treat someone with scleroder­ma who needed a strong medication (usually someone with early diffuse scleroderma), I would recommend methotrexate rather than Enbrel.

Q.  Is it possible to have rheumatoid arthritis and scleroderma together?

A.  The short answer is “yes.” When the skin in scleroderma is very thick and tight, especially if it’s thick over joints, it is very difficult to tell whether the joint itself is swollen or just the skin.

Joint inflammation, pain, and swelling may occur early in scleroderma and may be the first sign of scleroderma.

Later (or in some cases at the same time) the skin thickens. In this case the joint prob­lems are actually part of scleroderma.

In a small percent of patients, scleroderma and rheumatoid arthritis may coexist (or overlap). In most cases, however, the joint problems are actually part of scleroderma – ­even if the “rheumatoid arthritis blood test” is positive, which occurs in about 20-25% of all patients with scleroderma.

Q.  If you have inflammation of the lung, should your doctor treat it or just wait to see what will happen?

A.  There are now multiple studies that sug­gest that if there is truly inflammation of the lung, the likelihood is that there will be ongo­ing and permanent damage to the lung.

The greatest loss of lung function in scle­roderma occurs within the first 4-6 years of scleroderma. Inflammation of the lung can be diagnosed by open lung biopsy, bron­choscopy with washing (or lavage), and/or high-resolution chest CAT scan.

If a patient with lung inflammation has had their scleroderma for less than 5-6 years. this suggests that this person is at continuing risk of losing lung function.

Having said that, it is not clear whether we yet have a medicine that will stop the damage. The National Heart, Lung, and Blood Institute. a branch of the National Institute of Health, is sponsoring a multicen­ter study of Cytoxan® (cyclophosphamide) versus placebo in scleroderma patients with lung inflammation (active alveolitis is the fancy term) who are early in their scleroder­ma course. Hopefully, this trial will settle the issue of whether Cytoxan might be an effec­tive drug in stopping lung damage.

Gamma-interferon is another medicine which is being looked at in idiopathic pul­monary fibrosis (a disease in which there is lung damage very similar to that seen in scle­roderma) because there is evidence that it may help heal the lung and improve lung function.

Q.  Should I exercise a little every day?

A.  I recommend that patients do range-of-motion exercises every day, particularly if they are losing joint motion (and that is usually most prominent in early diffuse sclero­derma).

I think warm-water pool therapy (with water temperature in the 80s and 90s), with or without pool exercises, can be beneficial, particularly since the water alleviates gravity. This may help increase flexibility.

If people are able to walk, particularly when the weather is nice, or they can walk inside an indoor mall, they should do so; and should try to walk 30-60 minutes several times a week.

If the lungs have severe damage, particu­larly if the damage is enough to require oxygen therapy, I think the level of exercise has to be reduced to a level that’s tolerated fairly easily.

This is a topic that should be taken up with your doctor and your lung doctor (if you are seeing one).

Q.  What are the criteria for bone-marrow transplantation?

A.  Although the criteria may be slightly different in different parts of the country and different parts of the world, the criteria gen­erally require that patient candidates have diffuse cutaneous scleroderma of less than 3-4 years’ duration, plus evidence of heart, lung, or kidney involvement.

The reason is that there is a significant risk from the transplant itself. In scleroderma it’s beginning to look like there is a 10-15% mortality rate in the first 1-2 years after transplant.

The criteria for entry, therefore, must reflect this risk by requiring that the patients who receive a transplant have significant scleroderma involvement. In other words, these patient transplant-candidates have a predicted 50% risk of dying in the next 4-5 years if their scleroderma is left untreated.

At this juncture, bone marrow (or stem cell) transplant is still an experimental proce­dure. The centers performing them are learn­ing more and more about safer ways to per­form the procedure. Nevertheless, stem cell transplant is a high-risk procedure, and thus patients should have high-risk disease in order to justify these heroic measures.

 Q.  What can you tell me about “throat-stretching”?

A.  Actually the stretching occurs lower in the chest than in the throat. Generally the narrowing is at the end of the esophagus (the feeding tube that leads to the stomach) just before the esophagus joins the stomach.

The reason that the narrowing (stricture or scarring) occurs is that the muscle that nor­mally closes the esophagus from the stomach gets weak, and the opening between the esophagus and stomach remains open much too long a time. This allows hydrochloric acid (which is a very strong acid) and stom­ach juices to reflux (or back up) into the esophagus and actually “burn” the esophagus, much as strong acid might burn any tissue. As a result, there may be a scar that forms at the end of the esophagus.

Esophageal dilatation (or stretching) is the correct term for the procedure. A tube is passed through the mouth and down the esophagus and actually stretches the narrow­ing at the end of the esophagus. This allows food to go down more easily.

Unfortunately, dilating the opening can also then allow stomach contents to reflux back into the esophagus. Nexium® and other proton-pump inhibitors (Prevacid®, Prilosec®, Protonix® and Aciphex®) are very good at decreasing the amount of acid in the stomach juice. When stomach juice refluxes into the esophagus the juice is no longer acidic and, therefore, is much less likely to burn or scar the esophagus.

Q.  What does HDIT stand for?

A.  High Dose Immunosuppression with Transplant (HDlT). This is another name for stem-cell transplant.

Q.  Tell me something about Bosentan.

A.  Bosentan is an inhibitor of endothelin.  Endothelin is a naturally occurring substance made by the lining cells of blood vessels, which causes the blood vessels to constrict or narrow, causing decreased blood flow. This is especially important in the lung circulation where blood vessels may be narrowed and scarred from scleroderma.

This narrowing in the pulmonary circulation may lead to high blood pressure in the pulmonary circulation (pulmonary artery hypertension).

Pulmonary hypertension (increased blood pressure in the artery inside the chest which goes from the heart to the lungs) becomes a major problem in about 10% of patients with long-duration scleroderma.

Endothelin levels are high in patients with pulmonary artery hypertension; and the vaso-constriction caused by high levels of endothelin worsens the condition. Blocking the effects of endothelin should lead to relax­ation in the blood vessels and increase the blood flow into the lung.

In December 2001, Bosentan was approved by the Food and Drug Administra­tion for use in pulmonary hypertension in scleroderma. In trials, Bosentan improved exercise capabilities, but the long-term bene­fits and risks are not yet known. Only time will tell whether this drug will be of major benefit to scleroderma patients with pulmonary hypertension.

 Q.  What can be done for tight skin and itch­ing and for skin cracking under the breasts’?

A.  Sclerodermatous skin (be it from sys­temic sclerosis thickening or from a localized form of scleroderma like morphea) has lost many of its wound-healing properties and does not protect the underlying tissues in a normal fashion.

“Cracking” of the skin under the breasts is partly related to the fact that there is a warm, constantly moist environment under the over­hanging breast that promotes maceration and breakdown of the skin as well as fungus infection.

It is important that the tissues underlying the breast be given a chance to dry out and be treated with antifungal agents. Sometimes gauze-like material and dry powder need to be put between the skin of the chest wall and the skin of the breast to keep the area dry.

Once the breaks in the area have healed, the area needs lubricating oils, because that skin has lost its own lubricating oil glands.

Q.  Can diffuse skin thickening go into remission after three or four years’?

A.  The term “remission” suggests that a dis­ease goes away and is not active. In sclero­derma, unfortunately, it is very hard to know whether the activity of the disease ever goes completely away. Often there are scars left over in the form of thick skin, or lung scars or some other evidence that scleroderma has been there, As investigators, we have a very difficult time defining when scleroderma is active and when it is inactive.

More properly I should say that after 3-4 years, many people with diffuse scleroderma have improvement in skin thickening, flexibility, energy, and their sense of wellbeing. Their disease becomes much less of a prob­lem and the remaining evidences may be only Raynaud’s, heartburn, and tight fingers. So, yes, many people with diffuse scleroder­ma have a period of improvement that may last a lifetime.

Q.  Are there studies being conducted on embryonic stem cells?

A.  Stem cell transplants in scleroderma rely on purifying stem cells from the peripheral blood of adult humans with scleroderma. Embryonic stem cells are a different type of stem cell. Their use is quite controversial because of the issues related to how embryonic stem cells are obtained (i.e., from abort­ed fetuses, for example). How similar or dif­ferent the adult-derived stem cells are com­pared to the embryonic stem cells is not clear. I am not aware that there are major studies looking at embryonic stem cells in scleroder­ma, but I am well aware that there are several ongoing studies of adult-derived stem cells as a potential treatment for scleroderma.

Q.  What are specific selection criteria that might be good indicators for lung transplan­tation?

A.  Although there are patients with sclero­derma who have severe lung disease and should be candidates for lung transplantation, most lung transplant centers shun patients with scleroderma. The bias against scleroder­ma derives in part because there often are multiple organ systems involved in scleroder­ma. People with scleroderma may have mild degrees of heart, kidney, and gut disease that have not been discovered prior to transplant. Reflux (which occurs in virtually all people with scleroderma) can lead to inhalation of stomach juices and acids and cause aspiration pneumonia, and the transplant physicians feel that the presence of reflux is a major reason not to transplant people with scleroderma.

The University of Pittsburgh has the largest collection of scleroderma patients who have undergone lung transplantation. Very few other centers have more than one sclero­derma patient who has undergone transplan­tation. The experience at Pittsburgh suggests that scleroderma patients who undergo lung transplantation do as well as other people.

Unfortunately, the diagnosis of scleroder­ma seems to be a very strong reason for some centers to exclude patients. Until lung trans­plant physicians become convinced that scle­roderma is a good group for lung transplantation, this situation is not likely to change.

Reprinted from Scleroderma Voice 2002 #3.  Voice is a publication of the USA Scleroderma Foundation.

Keeping Hands Flexible

By Elaine Sobin

You simply must fight scleroderma’s impact on your hands. From my own non­-expert experience, the only alternative is a slow, inexorable progression to what I saw at a scleroderma meeting: a lovely lady who had both hands frozen into clenched fists still feeling pressure. Fortunately, she had a kind husband who did everything she couldn’t.

I’ve had scleroderma for some 40 years, luckily not too badly. Except for needing to have my esophagus stretched, my only prob­lems have been small mouth and curling fin­gers on both hands.

When my rheumatologist referred me to a hand surgeon, my right thumb was under the forefinger, and the skin on my hand felt so tight over the knuckles it looked as though the skin would split. Not a vein or bone was visible. It felt like I was wearing a drying leather glove, or a giant was crushing my hand.

Paraffin treatments could do nothing for the pain deep in my palm. The high-powered jets in the Jacuzzi at my gym penetrated deeply enough, but they may have helped destroy my CMC joint (below the thumb. at the wrist), which the surgeon ended up replacing.

 Making a Commitment to My Hands

After my joint replacement, I had physical therapy three times a week for a month. It was minimal, but my hand liked it.

If I could see improvement with that (l asked myself), what would happen if I com­mitted myself to all-out warfare?  We owe it to ourselves to see veins and bones in our hands, a little bending in previously frozen knuckles, soft and pliable skin, and remission from crushing pain.

Now I exercise my hands one to two times daily. If I skip a day, the skin starts to harden.

Following, I describe my hand routines.

 Heat and Massage

I like my heating pad set on High, wrapped around my hand for 15-20 minutes.

When I was getting therapy at the hand institute, for massage they used a therapeutic hand lotion. But my hands love Bag Balm in a green can, bought at a local feed store. It’s the thickest, gloppiest, most penetrating cream I’ve tried.

I divide the can into smaller plastic bottles to keep it as fresh and uncontaminated as possible.

I recommend you massage it into both hands, even if you think only one hand is “bad.” I was amazed to find (see below) the pinky of my “good” hand had less strength than the pinky of my “bad” one.

Keep massaging and wringing every cen­timeter of your hands until you can almost feel it going under your skin. Take more cream if you need it.

 Stretching and Bending Hand Exercises

Perform every motion to the utmost of your capacity, firmly but gently. If a motion feels useful, repeat it 10-20 or even 30 times. You say time is money, and you can’t afford to spend this much time? Your return on this investment will be more valuable than money.

Note: Try to alternate stretching and bending exercises.

1.         Holding your four fingers with the other hand, press the fingers away from your thumb. At the same time, stretch your thumb as far away from the fin­gers as possible.

2.         Try to bend the knuckles on all four fingers at once, as far as possible, using the other hand to apply pressure.

3.         Now try to bend the knuckles on each finger individually, as far as possible, applying pressure with the thumb on the other hand.

4.         Press both hands together, trying to straighten your fingers at the knuckles. Also try to press each hand backward at the wrist, as far as possible.

5.         Keep massaging the flap of skin between thumb and forefinger.

6.         Press a couple of fingers of one hand between each finger of the other hand.

7.         Stretching your hand from thumb to pinky (as hard as possible), twirl and stretch each finger with as much effort as possible in one direction and then the other.

 Exercising with Toys

Note: You can also do your mouth exercises while you do these.

Balls: I happen to have a pretty stiff foam­ rubber baseball and a beanie-bag-type of squeeze ball, so I’ll squeeze each ball 60-100 times with each hand.

Weights: I have the old-fashioned 2-pound iron dumbbells. Bend your arm, holding a weight in each hand, and curl your wrists only up and down slowly 30 times. Turn your hands facing the other way and repeat. Then holding the dumbbell with two fingers only, curl the dumbbell up and down 30 times; repeat till all fingers have been used.

Clothespins: Holding a clothespin between thumb and forefinger, press 30 times. Repeat with thumb and all fingers. (This is when I discovered my “good” pinky was actually weaker than my “bad” one.)

More Ideas for You

Add, subtract, and tailor the exercises above to your own needs. I  try to do some exercises wherever I am.

Examples:

  • The driver’s wheel in my car is a great place to press curved knuckles straight; when you are a passenger you can do the same thing on the elbow rest.
  • One of my favorite places is the Jacuzzi because of the heat and mois­ture (though I can only stand it 10 min­utes or so). With your palms spread next to your body, raise yourself by your hands, concentrating on straight­ening your fingers. (If this is too hard, I highly recommend Aquasize or work­ing out with a “noodle.”) Also, flatten your palms and try to raise one finger at a time.

If you have the opportunity to work with a good therapist – unfortunately, I’ve seen and heard a lot of horror stories – you’ll have a good idea of much pressure you, or someone working with you, should apply.

I’m still working on refining my routines, and trying to find what works best for me.

For me, as for all of us, hand therapy is a work in progress. But for now, I am keeping some flexibility in my hands, and the crush­ing pain is gone.

Reprinted from Scleroderma Voice 2002 #3.  Voice is a publication of the USA Scleroderma Foundation.

Gifts of time and love are the basic ingredients of a truly Merry Christmas!