Insight Newsletter Fall 2013

 cropped-images-11.jpegwww.sclerodermasaskatchewan.ca 

 

Scleroderma InsightFall 2013

Presidents Report
Hello to members, family and friends:

As you can see we have a new face and name for our newsletter. I would like to thank Sharon Foster (a new member) for her suggestion of Scleroderma Insight. A vote was held at our October 19th meeting and Scleroderma Insight was chosen from the names submitted.

I’m not sure how many of you know that 2013 marks a 30 Year Anniversary for our Scleroderma Support Group. It was in 1983 when Dorothy Wilson and Sharon Benson held the first meeting. I believe they would be happy to know the work they began is still going on.

I hope you enjoyed a healthy summer. Perhaps you were able to do a little travelling or had time to just rest and relax at home. Sometimes home is the most comfortable place to be. My husband and I spent most of June in San Diego, visiting our son and his family. We had a lot of fun with two young grandsons. I’m not sure where the term ‘The Golden Years’ came from, but I believe grandchildren are the ‘gold’ in those ‘Golden Years’.

Four of our members attended the National Scleroderma Congress in Hamilton on September 27 th and 28th. The Congress was well attended and a most informative event. You will find information on the workshops we attended in this newsletter and also on the Scleroderma Society of Canada’s website.

Continued…

(Photos below of members from Alberta and Saskatchewan attending 2013 Congress in Hamilton)

Pic SASK 1Pic SASK2

 

 

 

 

 

 

 

 

 

 

President’s Report continued…

We were very saddened to hear of Dr. Markland’s death. Dr. Markland saw several of our members while working with the Canadian Scleroderma Research Group. She was kind and caring, giving us hope that a cause and cure will be found. Dr. Markland went above and beyond for our group, hosting garden parties and donating proceeds to our cause. She will be fondly remembered by many of her patients.

I would like to thank Gary Uhren and the U of R Rams for their donation of 5 – $100 gift cards to the Rider Store.  These will be added to our ticket fundraiser in the spring.

At our October meeting our guest speakers shared their experience of working with Haiti Arise. The volunteers took charge of a day clinic for those in need of medical help. Dave and Monique operated the pharmacy, dispensing medication to patients and helping where needed. We enjoyed pictures and stories of the beautiful people of Haiti.  Monique and Dave plan to return to Haiti (spring of 2014) to continue this work.  Dave also spoke on the Lean Program and you will find his report on page 10 of this edition of Scleroderma Insight.

Today is November 4th and Regina is having their first snowfall, before we know it, the Holiday Season will be upon us. I’d like to take this opportunity to wish you all a Merry Christmas and may you have Health, Happiness and Many Blessings in the coming year.

Louise Goulet

Steak Night Great Success
Our June fundraiser, a Steak Night, was held at the Creekside Pub in Regina with approximately 100 people in attendance. The evening was most enjoyable as we shared good food, laughter, conversation, and a few drinks with other members, family and friends. Thanks to those who sold tickets and promoted this event. Thanks to merchants who so kindly donated door prizes – TCU Financial Credit Union, Sobeys, Shoppers Drug Mart, Safeway, Affinity Credit Union, and two friends, Rose Cardiff and Jan Nicolson. Jan collected over $500 in donations from friends and neighbours.

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Scleroderma Meeting Minutes Oct. 19, 2013
The fall meeting of the Scleroderma Association of Sask. was held at the Wascana Rehabilitation Center in Regina on October 19, 2013 with 16 in attendance.
President Louise Goulet called the meeting to order at 10:15 am and asked people to give their names and a brief biography. A moment of silence was observed in memory of Dr. Janet Markland who died in August.

Adoption of the agenda with the following additions was moved by Janet Campbell, seconded by Shirley Gillander, and carried. Added was information on heated products for hands; a conference call set-up for the executive; decision on a Newsletter name; photo release form; fund-raising options.

The minutes were declared adopted as read by Louise Goulet.

In business arising from the minutes, the SSC 2014 annual Conference location is changed from Regina to Winnipeg and will be held there Sept 19-20, 2014.

Moved by Andy Sereda, seconded by Dave Sereda that we cancel the motion passed at our spring meeting to host the SSC 2014 Annual Conference.  Carried.

It was noted that our Scleroderma banner was displayed in downtown Regina last June.

The Treasurer’s report shows a balance of $17,299.71 with most income resulting from the Steak Night last June and general donations. Greatest expenses were the Steak Night and a donation to SSC for a newer website which is being well used. Moved by Andy Sereda, seconded by Janet Campbell that the Treasurer’s report be adopted as printed. Carried.

No correspondence was received for the meeting, but sent on behalf of our group were letters regarding our Steak Night to businesses asking for donation of door prizes; thank you notes to donors of general donations; a letter to the U of R Rams thanking them for donating five $100 Rider gift cards which will be raffled at our next fund-raiser; a note to the family of Dr. Janet Markland expressing our sympathy and thanks for her compassionate care and involvement in CSRG; to the Government of Sask. requesting a declaration by the province of June as Scleroderma Awareness Month; sending of Scleroderma pamphlets to new members in Saskatoon and Yorkton.

New business discussions followed. The photo release form was circulated. Members were asked to consider making a donation to CSRG in memory of Dr. Markland. Moved by Janet Campbell, seconded by Monica Dohaniuk that $8,000 be donated to CSRG in her memory. Carried.

Comments on the June Steak Night were that it was a better location with more food choices, and that we could have the draws for Rider gift cards and for Shirley Gillander’s quilts at a 2014 Steak Night.  Tickets for these items could be distributed at our Spring meeting in April 2014.  There were no more details regarding a Walk or Run Fund Raiser, and if it is to be held a decision must be made regarding when and where.

If we proceed to set up a conference call for executive members, SaskTel needs our banking information to be certain we can pay for it. Cost would be $0.10 per person per minute.

Four members attended to 2013 SSC Annual Conference in Hamilton, Ontario in Sept. Shirley Gillander, Joyce Kellington, Louise Goulet gave reports on sessions they attended and their reports will be printed in the newsletter.

Following a break for lunch the meeting reconvened at 1:00 pm.

During sharing time one member inquired as to whether someone with a serious illness like Scleroderma could access Palliative Care services. Those interested can contact the Palliative Care Coordinator in their health region. An inquiry was made as to whether Rheumatologists know about Scleroderma. It appears that in SK this is certainly true, especially in Regina. One member is still holding off on receiving a lung transplant and is being seen every six months by her specialist. A new product called O’Keeffe Working Hands was recommended by a member for dry hands, also Fucidin cream or ointment for finger ulcers. When Scleroderma sufferers require special care in hospital, such as extra warmth, there is now an article printed that a patient can take to show care givers. One person described her multiple problems including dry eyes and circulation problems.

Janet Campbell introduced Monique and Dave Sereda as our speakers for the afternoon. Monique spoke first on how she and Dave had volunteered on a Medical Mission to Haiti in March 2013. Their team included one doctor, six nurses and some of their spouses. Both of them worked in the Pharmacy of the Haiti Arise Clinic in a secure compound a short distance from Port-au-Prince. The doctor and nurses saw 951 patients in seven days with conditions ranging from minor to very serious, with Dave and his staff filling hundreds of prescriptions. On Saturday morning the team did a community walk to visit nearby homes. Also in the compound was a school for pre-Kindergarten to Grade 6, 10 classrooms and about 400 children. A technical school for adults taught classes in many trades. Dave then spoke on how Saskatchewan Health has adopted a LEAN philosophy to Health Care. Please refer to the newsletter for a summary of the presentation. Following this presentation there were a few drug related questions for Dave. The speakers were thanked by Shirley Gillander.

The majority of those present chose “Scleroderma Insights” as the new name for our Newsletter.

There are now heated gloves, mittens and pouches being produced by High Heat Gear in Calgary, Alberta. These might be able to be on display at our next meeting, which is tentatively set for April 26, 2014. Possible guest speakers for that date are a dietician, a dentist or someone to share computer knowledge.

There is now a researcher who has caused Scleroderma in a mouse and will try various treatments on it. The SSC recognizes the value of having some board members who do not have Scleroderma.

The Bank of Nova Scotia has a policy of matching funds raised by charitable organizations and assisting in their fund raising efforts. There was some discussion on how to access exceptional drug status for some medications so as to decrease our costs for drugs.

SSC requests input on whether to have awards presentations annually. This year SSC has allocated $22,000 to CSRG and $5,000 to the mouse research project.

Adjournment: moved by Joyce Kellington.

All you need is love. But a little chocolate now and then doesn’t hurt.”
Actually, chocolate can make life better. Dark chocolate may lower your risk of heart disease by reducing blood glucose and bad cholesterol while boosting levels of good cholesterol. The reason: Chocolate contains compounds called flavanols, which have antioxidant and anti-inflammatory properties.

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.

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.

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

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Please contact Gerald Shauf (306) 634-3433 or Janet Campbell (306) 757-0962 for more information or to place an order.

If you have any suggestions, health tips, or stories you wish to see featured in Scleroderma Insight please mail or email them to Gerald Shauf or Janet Campbell. We would like to hear from you and share your ideas/stories/health tips with all our members.

Dieting is the only game where you win when you lose.”

“There is no charm equal to tenderness of the heart.”

“Hope is the confident expectation that something good is going to happen to you.”

National President Opens 2013 Congress
President, Maureen Sauve, in her opening address, spoke of the goals the committee wanted to bring to the attendees. “Our goal is to deliver what you need most from this gathering of the international community of scleroderma professionals, patients, families and advocates. You will find sessions, information and conversation geared to every level of expertise and experience. You will have access to national and global researchers, physicians and health professionals.

Our goal is to help everyone attending to become his or her own best advocate as we aim for whole-patient care that “treats the patient, not just the disease.”

There were 25 different sessions to choose from with 33 different researchers, physicians, and health care professionals presenting.

At the end of the Congress we were invited to go to SSC Facebook and introduce our Scleroderma Hero. One of my Scleroderma Hero’s is a longstanding member on our Support Group, Olga Sereda. Olga has taken on the responsibilities of Recording Secretary for over 20 years. Not only does she do an awesome job recording our minutes, Olga in her quiet, unassuming way, keeps the chairperson on task, supplies baking for meetings and supports all our fundraisers. Olga has rarely missed a meeting and travels from Moose Jaw to Regina or Saskatoon, through stormy weather and slippery roads, to carry out this responsibility. Please go to: http//www.Facebook.com/SSCFacebook and tell us who your Scleroderma Hero is.

Article written by Louise Goulet

I think a hero is an ordinary individual who finds strength to preserve and endure in spite of overwhelming obstacles.
– Christopher Reeves

Sjogren’s Syndrome
Dr. A.M. Bookman – presenter

Dr. Bookman is the co-ordinator of the Multidisciplinary Sjogren’s Clinic at the Universe Health Network. Sjogren’s is an immune system gone wild.

Symptoms
– Dry nose – try Secaris Nasal Gel
– Dry eyes (feel like sand in them)-use eye drops 3 times per day. (only preservative free)
– Dry mouth unable to eat a cracker without drinking (leads to increased dental problems )
– Trouble speaking
– Trouble swallowing
– Swollen salivary glands
– 3/4 scleroderma patients have dry mouth, (Biotene makes a mouth moisturizer)

Helpful Hints
– Wear wrap around sunglasses to protect against wind.
– Put hot packs on eyes in morning.
– Scrub eyelashes with Johnson?s baby shampoo (diluted).
– Untreated dry eyes can cause ulcers on cornea.
– Dry mouth can cause yeast build up and fissures in corner of mouth.
– Never sleep with dentures in mouth.
– Keep dentures very clean.
– Use anti bacterial toothpaste (Biotene makes one).
– Have teeth cleaned 3 times per year.
– Nystatin is anti-yeast medication.
– Ketoconazole is cream for fissures in corner of mouth.
– Ask for amalgum fillings (last longer).
– Ask dentist to use child sized instruments.
– Try Manuca honey for finger ulcers ( health food store).

Workshop info from: Joyce Kellington

Please Note:We have discontinued collecting empty computer cartridges and old cell phones for recycling.  Thank you for past donations.

 

Improving Hand Function in Scleroderma
Luc Mouthon, Dr. Serge Poirdeau, and Els van den Ende – presenters

Luc Mouthon is a world expert in several rheumatic diseases, in particular scleroderma.

Dr. Serge Poiraudeau is professor of physical medicine and rehabilitation at Paris-Descartes University, head of the department of physical medicine and rehabilitation, Cochin Hospital.

Dr. Cornelia (Els) van den Ende, Physical Therapist, Social Scientist, PHD. Her research focuses on the optimization of  nonpharmacological management of rheumatic diseases (in particular osteoarthritis and systemic sclerosis.

How to protect the skin /hands:
Avoid temperature changes
– Heat all rooms in house
– Protect nose, head and feet during night
– Wear gloves or mitts outdoors
– Avoid longstanding pressure on hands
– Use palms to lift with both hands
– Wear rubber gloves for housework
– Don’t use fingertips
– Avoid long time in water
– Use mild soaps
– Avoid injury (cuts)
– Use ski mitts from ski shop for warmth and wear silk gloves inside.

Exercise to stretch skin and increase blood flow:

Move fingers apart slowly, hold for 2-3 seconds,  Begin with 3 repetitions, make it a daily routine.

– Spread fingers on flat surface and use other hand to gently press down on fingers to straighten fingers that have curled.

– Make a fist, partial and then full fist, hold for few seconds.

– Put palms together with baby finger on table, slide away from you and back to stretch wrists.

– Arm bent with fingers to shoulder, now straighten arm, repeat.

– With palm flat, touch thumb to each fingertip, one at a time, back and forth.

Use assistive devices whenever possible.
– Velcro closures
– Hooked knife to cut bread
– Pen holders
– Card holders
– Book holder
– Utensils with thick grip handles
– Spread out activities over the day so you won’t get too tired

Orthosis Splints – made for you by occupational therapist.
– When splint is off, you can exercise and stretch fingers.
– Use paper towel roll to exercise wrists.
– Grip different size bottles and bowls.
– Squeeze rubber ball.

Workshop info from: Joyce Kellington

Beauty has nothing to do with your looks. It’s how you are as a person and how you make others feel about themselves.
Author – unknown

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 PD13, you are paid for 2013. If it has X, your 2013 membership is valid as a result of a donation. If there is nothing after your name, you have not paid for your 2013 membership. 2014 memberships are payable before April 30, 2014.  Please remit $20.00 fees to SASK c/o Gerald Shauf if you have not already paid for 2014. 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.

Pulmonary Arterial Hypertension
Presenter: Dr. Janet Pope, professor of medicine in Rheumatology, Epidemiology, and Biostatistics at Western University in London, ON.

Pulmonary Arterial Hypertension is a chronic disease that affects both heart and lungs. Arteries that bring blood from the heart to lungs become blocked by tightening of arterial wall growth and thickening of cells in arterial wall, a formation of blood clots.  As they become narrow it is harder for the blood to reach the lungs and for oxygen to circulate through the body. This results in fatigue, trouble breathing, dizziness, swelling of ankles, chest pain and racing pulse. As pressure builds, the heart’s lower chamber, (right ventricle) works harder to pump blood, causing heart muscle to weaken and eventually fail.

Classes of PAH

#1– No restriction of ability to perform activities of normal living….some shortness of breath

#2– Mild restriction of ability to perform activities #3– Moderate restriction of ability to perform activities

#4 — Severe inability to perform activities with breathlessness even at rest.

Dr. Pope stressed many times that it is very important that patients be diagnosed early as possible before the right ventricle is damaged. Echocardiogram done annually along with pulmonary function test will help keep an eye on this.  Right heart catheterization is the only way to make diagnosis of PAH.

Dr. Pope would like to see more biomarkers available for this disease (these are traceable substances that can be introduced to body as a means to examine organ function — like a radioactive isotope, or it could be the presence of an antibody which may indicate an infection.)

Pim -1 is a promising new biomarker

Drugs like Bosetan and Macitentan are used and result in less worsening of symptoms and a better quality of life. Sildenafil and Iloprost are also used.

Summary
Early Diagnosis
Early Treatment

A combination of drugs is sometimes best and it is better to add a drug than switching drugs.

Workshop info from: Shirley Gillander

Sharing information from SSC’s 2013 Annual Report:
This year, SSC has continued to innovate, expand and reach out to more patients, families and healthcare professional, all while remaining a lean and efficient organization. Our efforts to raise the profile of scleroderma continued this year with a number of new initiatives that maximized impact but minimized cost. Collaboration continues to be a Society focus as we look to find win/win situations for the organization and, most importantly, for the scleroderma patients and families we serve. This has translated into stronger connections with the provincial societies in particular, as well as a number of new possibilities in terms of funding.

Our social media presence allows the SSC to deliver information across the country instantly and cost effectively, drawing timely attention to news, issues and events including the 2013 Congress in Hamilton and the lighting of the CN Tower for World Scleroderma Day. Social Media makes the organization substantially more accessible by building virtual communities and providing patients and their families with platforms for sharing thoughts, ideas and experiences.  Social media will continue to be a Society priority as we strive to build and contribute to the online scleroderma community, reaching thousands of people every week.

The SSC website remains both the public face of our organization and an educational portal for patients and their families. This year, we launched a long-overdue upgrade to the site with Zack Seropian of WebBug delivering outstanding results. While the new site is now operational, it will remain a work-in-progress.

We are working towards integrating the provincial society sites to provide a greater scope of information and even better service to the site’s visitors.

While the work ahead is significant, there is a tremendous sense of optimism, cooperation and generosity in the scleroderma community among the scleroderma societies in Canada, North America and even internationally. We will continue to build success upon success as we work to improve the lives of scleroderma patients and their families.

Coping With Stress:
Presenter: Dr. Warren Nielson

Dr. Nielson is a member of the CSRG and has led the development of multidisciplinary treatment programs for Inflammatory Arthritis, Lupus, Fibromyalgia, Osteoarthritis and Scleroderma.

Stress and Depression increases disability, fatigue and pain.  Depression in Scleroderma is partly due to the many changes in your life such as:
– Facial changes, muscle pain, difficulty remembering, anxiety, anger, fear, Raynaud’s phenomenon, difficulty concentrating, and an uncertain future.

Patients experience daily hassles such as:
– Side effects of medication.
– Declining physical abilities.
– Changes in body image.
– Struggling with daily chores.
– Old coping strategies may not be effective any more.

However, not everyone with Scleroderma goes through the above.  There is Healthy Sadness: Where patients feel no loss of self-esteem.
– Negative feelings are an appropriate reaction.
– Do not feel discouraged about the future.
– Stay productive and involved in life.
– Negative thoughts are realistic and negative emotions go away after a short time.

Taming the Emotional Roller Coaster
Change your response to your situation both physically and mentally through:
– Relaxation Techniques such as: Yoga, Meditation, Self-hypnosis, Progressive Relaxation, Tai Chi, and Diaphragm Breathing.

Impact of Thoughts:
It is the thoughts that cause anger, frustration, resentment and the results are: an increase in heart rate, muscle tension, constricted blood vessels, and all these activate the immune system.I’ve been through many disasters in my life and only a few were true”

Keep a Thought Record:
Ask yourself:
– Is my thinking distorted?
– What could I think instead?
– What could I do instead?
– What emotions am I feeling?
– Is there a better way of thinking “It isn’t true that I can’t cope with this, I wish this wasn’t happening but there are things I can do to help it or cope better”.

Workshop info from: Louise Goulet

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“SSC Social Media invites you to: “Like” the SSC on Facebook http://www.Facebook.com/SSCFacebook

– Share relative content on Facebook, including SSC and SSO posts.

– “Comment” on the SSC/SSO Facebook posts, photos, page, etc.

– “Recommend” the SSC Facebook page to friends and relatives

– “Post” about scleroderma yourself and “tag” the SSC when appropriate.

– Participate in online campaigns aimed at spreading awareness/raising funds for scleroderma.

Follow SSC on Twitter@SclerodermaCAN

– “Tweet” relative information using hashtags that will draw attention, try #scleroderma #rare #autoimmune #findacure

– “Re Tweet” relative information especially from the SSC and SSO

– “Mention” relative people/organizations using their Twitter handle

– “Reply” to relative people/organizations Key demographics: Women (35 – 44) – 149 Canadian

– Most people reached at one time 13.5 K 06/25/13

Image related to World Scleroderma Day (people reached in the last 28 days: total = 5,786)

– Overall posts reach an average of 899 people.

– Weekdays optimal posting times are between 6:30 am – 10:30 am** and 10:30 pm. Weekends: 8:00 am – 10:30 pm.

Bridging the miles: by Jim Mundy
Making support group attendance possible for scleroderma regardless where you live: through an Internet Meeting – on line – Video through Skype’.

Jim’s current interest is in bringing technology to bear to enable rare disease sufferers from across the country to come together for education, support activities, and urging government to fund rare disease treatments.  When someone is diagnosed with a rare disease, family and friends also benefit from a support group as well as the patient.  Support groups offer: instant acceptance, an increase in empowerment, self-esteem, normalizing (I feel normal in this group), sharing of information, help members to be more powerful, not alone (aware others go through the same experience), members have a lower level of depression and have a face to face connection.

An on line Manual is available at: jim.mundy@alpha1canada.ca

– How to hold a support group meeting and
– How to run a support group over the Internet.

On Line Video Skype – is like being in the same room.

– Chat panel – ask to speak one at a time.

– Discussion should be open (rules for members should be set out and made clear)

– Confidentiality is very important – must not be repeated outside the group (members must sign an agreement to maintain confidentiality).

– A leader has less control over an Internet meeting.

– Body language is 70%, that’s why Video is much better than Tele-conferencing.

– Sharing of duties is important and should not be the responsibility of one person (there are many talents in a group and these should be shared).

– Avoid blaming anyone and bringing-up mistakes (all are volunteers).

– Be realistic (don’t traumatize others by their mistakes).

– When someone leaves the group – don’t think of them as drop-outs but graduates.

The Leader’s responsibilities:
– Expertise of leader is to give support to all.
– Kind words, positive feedback, understanding nods.
– Ensure members do not feel alone.
– Help members to feel safe (a safe place to talk).
– People outside the group do not often understand that you cannot do it alone.
– If there is a disagreement, it is up to the leader to bring it under control.
– Support group leaders should have some training.

Log in:
Should have a list of people (members) that can call in.

Blog site: must be registered .

I found this workshop very interesting and hope we may be able to offer this to our members in Saskatchewan in the near future. We have many members at a distance and may want to join through Skype.

Workshop info from: Louise Goulet

Significant Research information in SSC Annual Report:

The Canadian Scleroderma Research Group continues to maintain and grow the patient data registry. This registry has been a critical tool for a number of researchers who utilize the registry’s data in their own investigations. The registry has now influenced 106 published papers, one inpress paper and 123 published abstracts between 2004 and 2013. Amazing! We are all looking forward to more research developments and breakthroughs in the coming years.

Report on Dr. Jean-Luc Senecal’s Research work:

One of the many obstacles in the way of a cure for scleroderma has been the lack of a good animal model that would allow researchers to better understand the origin and development of the disease. As a result, the announcement by Dr. Senecal at the 13th International Workshop on Scleroderma Research this past August, that he and his team had developed an SSc-like mouse was a landmark for scleroderma researchers. The SSc-like mouse will allow investigator’s around the world to better study the disease and evaluate targeted therapies. This breakthrough brings us one big step closer to finding answers and treatments that do more than simply control the symptoms of scleroderma patients.

Life expands to fill your dreams”

Saskatchewan Healthcare – Journey to LEAN
The provincial healthcare landscape has been focussed on improving the patient experience through the use of LEAN principles over the past few years. The goal is to reduce waste and non-value added activities in the entire system.

Under the guidance of our LEAN consultants we are undergoing significant change, looking for new ways to attack the flaws in every aspect of our provision of care.

Some of the “Wastes in Medicine” include waiting, defective products, excess movement and inventory.  All health employees in the province are undergoing a crash course in LEAN methodology which consists of a one-day workshop. Additionally, approximately 800 leaders are in the process of receiving more in-depth training; roughly 55 days over 18 months.  Several health regions are undertaking 3P events to plan renovations or new facilities, including Moose Jaw Union Hospital, the Children’s Hospital and Cancer Agency. These week-long events try to incorporate all disciplines and the patient’s perspective into the design phase. Other LEAN tools used include the Rapid Process Improvement Workshop. This, too, is a week-long event that involves various healthcare professionals and a patient/family representative. The purpose is to attack a very specific problem and achieve measurable improvements in a very short period of time. Health Regions are regularly looking for members of the public to participate in these endeavours and share their perspective. Additional changes include daily huddles where teams gather to assess their workload and challenges on a regular basis. Patients and visitors to hospitals will notice more and more teams assembling to discuss these issues.  A unique component is often there is a senior member of the health region and possibly even the CEO attending to hear the frontline workers and show their support. The LEAN journey has progressed very rapidly in Saskatchewan and will take a great deal of ongoing effort.  It has not been without challenges and struggles, with garnering staff buy-in and changes in workload.

However, involving patients in many of these projects and decisions provides the perspective needed to make meaningful improvements.

Dave Sereda
Regional Director of Pharmacy
Five Hills Health Region

SASK EXECUTIVE:
President:/Fundraiser
Louise Goulet
Phone: 306- 584-1950
louise.goulet@sasktel.net

Vice President:/Fundraiser
Shirley Gillander
Phone: 306-525-6377
sdgill@sasktel.net

Recording Secretary:
Olga Sereda
Phone: 306-693-1936
No email address

Corresponding Secretary:
Norma Redman
Phone: 306-532-4449
norperredman@sasktel.net

Newsletter co-Editor:
Janet Campbell
Phone: 306-757-0962
janet.campbell@uregina.ca

Treasurer/Newsletter co-Editor:
Gerald Shauf
Phone: 306-634-3433
465 Willow Bay
Estevan, Sask. S4A 2G3
glshauf@sasktel.net

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

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.

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It was suggested that scleroderma patients copy the following article ‘Fragile Scleroderma Patients Require Special Care’ and take it to the hospital with you, whether you are going to emergency or you are being admitted.

Fragile Scleroderma Patients Require Special Care

Theresa has Scleroderma. In the past two years she had numerous hospital stays and ER visits associated with complications of her disease that range from gastroparesis to kidney failure. All too often, when in hospital, she encounters physicians and nursing staff that have limited knowledge, if any, of Scleroderma or Systemic Sclerosis and the special care considerations patients require.

Hospitals need to know how to manage common symptoms of this disease. For me it’s about knowing that my caregivers understand the basics:

How to manage my digital ulcers, the painful skin, joints and GI issues. It’s a safety issue,” said Theresa, recently discharged from hospital for an intravenous infusion to open up her blood vessels.”  Scleroderma or SSc (systemic sclerosis) is a chronic and progressive autoimmune disease of the connective tissue. For unknown reasons, the immune system triggers the over-production of collagen (scar tissue) that damages the cellular matrix of connective tissue found in skin, tendons, ligaments, cartilage, bone, blood vessels, the gut and other internal organ surfaces. Cold fingers (known as Reynaud’s Phenomenon) is often the first symptom but the most characteristic feature of Scleroderma is the presentation of hard, hide-bound thickening of the skin. Less visible but of major consequence are the lesions that develop in small blood vessels (vascular lesions), which may involve major organs such as the heart, lungs and kidneys. The disease is incurable but not untreatable.

Who Is Diagnosed with Scleroderma?
Scientists are certain that Scleroderma is not contagious, not infectious, and not cancerous. Studies of twins also suggest that Scleroderma is not inherited. Although more common in women, with an average age of disease onset around 40 years, Scleroderma also occurs in men and children, from infants to the elderly. It affects people of all races and ethnic groups.

36% of Patients Hospitalized

Based on the 2010 Canadian Scleroderma Patient Survey, an initiative of the Scleroderma Society of Canada (SSC) and the Canadian Scleroderma Research Group (CSRG) and funded in part by the Canadian Institutes of Health Research (CIHR) and the SSC, 36% have been hospitalized for Scleroderma or Scleroderma-related symptoms. The main reasons for hospitalization were heart/lung, gastrointestinal, vascular and infection issues. While there are no Canadian statistics currently available about hospital stays for Scleroderma, Hospital Episode Statistics (2002-03) from the Department of Health, England reported:

14% of ER visits for systemic sclerosis required emergency hospital admission

10 days was the mean length of stay in hospitals for systemic sclerosis

5 days was the median length of stay in hospitals for systemic sclerosis.

Managing the Hospitalized Scleroderma Patient

Too often, when Scleroderma patients are hospitalized for surgery or treatment of other conditions or complications of their disease, they encounter staff with limited knowledge of Scleroderma. While the manifestations of the disease can vary greatly from patient to patient, the following checklist may assist hospital staff when developing a care-plan for hospitalized Scleroderma patients.

Increased sensitivity to cold and painful spasms in extremities (Raynaud ’s phenomenon)

Provide extra blankets. Avoid drafts. Maintain warmth particularly pre & post-op.

Ulceration, Impaired healing

Assess for signs of infection. Provide appropriate dressings.

Tight skin

Provide protection during surgery and/or procedures. Assess for signs of skin breakdown. Extra care required with venipuncture and blood pressure measurement.

Dry skin

Assist with moisturizing as required.

Painful hands and feet

Avoid injury, e.g. during transfer and ambulation.

Painful joints

Assist with repositioning. Provide extra pillows. Use massage and the application of heat. Assess pain and anti-inflammatory medications. Encourage ambulation as tolerated.

Impaired movement and mobility

Assistance may be required with feeding and oral hygiene.

Dry mouth, dry eyes (Sicca Symptoms, Sjogrens Syndrome)

Ensure drinking water is readily accessible. Maintain good oral hygiene especially when patient unable to drink. Assist with application of eye drops or ointment if patient to self-administer, particularly pre and post-op and prior to sleeping.

Esophageal involvement including difficulty swallowing:
Elevate head of bed. Provide extra pillows. Position the patient in an upright position when eating and after meals. Administer antacids as required. Discuss food preferences while ensuring adequate and appropriate dietary intake. Consult with dietician as necessary

Bowel involvement diarrhea and/or constipation; fecal incontinence

Assess for dietary requirements and medication regime. Consult with dietician as necessary

Shortness of breath on exertion
Allow patient to set the pace during physical activity. Assess O2 saturation and need for oxygen. Refer to respiratory therapist as needed.

Reduced capacity to cope
Create calm, supportive environment. Encourage stress reduction and relaxation techniques. Refer for social work assessment.

Increased skin sensitivity
Take extra care as patient has a low pain threshold.

Blood pressure irregularities and/or pulmonary arterial hypertension
It may signal kidney impairment requiring immediate intervention. If patient has pulmonary arterial hypertension, the anaesthetist needs to be alerted well in advance as anaesthesia carries increased risks. Extra care required with intubation. Maintain warmth to allow for optimal venous access.

 

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