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.)

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