Scleroderma Insight Fall/Winter 2015 www.sclerodermasaskatchewan.ca
Season’s Greeting’s to all.
I’m not sure how Christmas has crept up so quickly. A busy schedule and the wonderful weather have found me not ready for this ‘Festive Holiday Season’. Today is December 14th and we have just had our first real snowfall. It looks like we’ll have a white Christmas after all.
On behalf of our support group, I wish to extend our heartfelt sympathy to Tracy Hill and her family. We were sorry to hear of the death of Tracy’s husband. Tracy has been a long time member with our association, and has often travelled from Nipawin, to offer support to others at our meetings.
This past September, Joyce Kellington and I attended the Scleroderma Society of Canada’s National Conference in Hamilton. Once again we had the privilege of attending workshops with outstanding speakers, and the opportunity to learn more about scleroderma. This was the 9th SSC National Conference I have attended. I believe the opportunity to hear keynote speakers of the caliber found at the National Conference is a rare and an exciting experience. The breakout sessions are full of helpful information and at each Conference I have learned something new. Next year the National Conference will be held in Montreal. I hope many of you will consider attending. Further in this newsletter you will find information on 3 of the workshop sessions Joyce attended.
In October, I had the opportunity to enjoy a Pilgrimage through Portugal, France and Spain. Some highlights of the tour were Fatima, Portugal, where we visited the place where Francisco, Jacinta and Lucia lived, and where these children saw the apparition of an angel and the Virgin Mary. We travelled through the Pyreness Mountains of France to Lourdes and the historic walled city of Careassone In Spain we toured the quaint mountain village of Montserrat and the beautiful city of Barcelona that sits on the shores of the Mediteranean Sea. This was my first visit to Europe and at times, I felt like I had stepped back in time.
Our scleroderma support group meeting was held on October 17th in Regina with 18 members and guests in attendance. Our guest speaker, Tony Schmalz, was well received. Tony is a Registered Massage Therapist, and Certified LLLT Clinician. He gave an informative and interesting presentation on Laser Therapy and how it may help scleroderma patients. Tony is also one of Regina’s finest, a Fireman and EMT. Our next support group meeting will be on April 16, 2016 at Wascana Rehab Centre in Regina.
We have recently updated our SASK contact list. I would like to thank Shirley Gillander and Joyce Kellington for contacting those on our support group list and confirming home addresses, phone numbers, and an email address. The ladies enjoyed talking with you and we have made the necessary changes.
The past few weeks, I have been preparing a Brief to present to our Provincial Health Minister on December 17th. Shirley and I will address concerns expressed by scleroderma patients in our Province.
I wish to extend Best Wishes to all for a Blessed Holiday Season. May you enjoy time with family and friends and I wish you good health in the coming year.
Those who have an active membership have received the new magazine from the Scleroderma Society of Canada called ‘SclerodermaVoice’. If you did not receive this magazine, and would like to, please contact Steve Foster in Regina at (306) 545- 6653. You may have forgotten to update your SASK membership. Memberships are $20.00.
If you have any suggestions, health tips, or stories you wish to see featured in Scleroderma Insight please contact Janet Campbell, Newsletter Editor.
You may reach Janet Campbell by phone (306) 757-0962 or email: Janet.firstname.lastname@example.org
We would like to hear from you and share your ideas/stories/health tips with all our members.
If you have attended one SSC National Conference in the past, you may feel like there isn’t any reason to go again. You have been to the sessions, you’re aware of the currant research going on, and you have already connected with wonderful friends with whom you share your experiences. So what is the point of attending another Conference? The truth is that every Conference is different.
Perhaps the following statement, Maureen Sauve, made in her President’s Report at this year’s National Conference sums it up.
Happiness comes from your own actions. It is not something ready made.
“The annual National Scleroderma Conference is one of the greatest support resources that Scleroderma Canada Offers. This can be a life-changing event for many of our patients and care providers. The Conference provides a unique and inspiring opportunity for people living with this disease. The connections made at the conference are some of the strongest bonds and support networks that can be created for a person living with scleroderma.”
The Scleroderma Patient-centered Intervention Network (SPIN) is an organization of researchers and healthcare providers, which is working very closely with patient organizations and people living with scleroderma around the world.
Just prior to the National Conference, Louise was contacted by SPIN, inviting individuals to film a brief video that would share their experiences of coping with the challenges of scleroderma. These videos will be used by SPIN as part of online support programs being developed for people with scleroderma. The recording sessions took place at the Sheraton Hotel in Hamilton.
Louise received this email following the conference:
“On behalf of the SPIN team, I would like to thank you for sharing your experiences with scleroderma on video for our SPIN online toolkits. Your story addressed many different areas of concern for people with scleroderma, including how to deal with hand issues and advice on what tools to use to exercise or keep warm.”
Let the bell’s ring out, it’s Christmas!
We would like to thank Joyce Kellington for sharing information on the 3 workshops she attended:
Managing G.I. Involvement & Scleroderma presented by: Dr. Murray Baron
Dr. Baron is the chief of the Division of Rheumatology at the the Jewish General Hospital, where he has practiced since 1981, and is a professor of Medicine at McGill University.
Dr. Baron also heads up (CSRG) the Canadian
Scleroderma Research Group.
– Dry mouth and a shorter tongue impairs chewing:
- Trouble swallowing, esophagus narrowed (scaring), sphincter quits working (heart burn) occurs in 90% of scleroderma patients.
- Drug (motlium) helps with muscle action and moving food.
- Raise the head of your bed, use medication to decrease acid reflux and mechanical dilation of esophagus if necessary.
- Stomach damaged by scleroderma – won’t empty because muscle is weak, feels full quickly, lining of stomach becomes thin (leaky gut) nutrients in food are lost before they reach the bloodstream.
- Eat frequent, smaller meals – erythromycin helps muscle contractions
- Small bowel – food moves through slowly, causes bacteria to grow, different bacteria compete and cause malabsorption. Signs – oily stool, bad smell, diarrhea, bloating.
- New breath test to detect bacteria in small bowel
- Difficult to treat.
- Antibiotic (spirol) to treat bacteria (most serious part of gastro problems) MALNUTRITION
- Large bowel – diverticulitis, constipation, fecal incontinence (sphincter is weak)
- treatment – laxatives, sacral nerve stimulation for incontinence
- Dr. Baron highly recommended taking magnesium bisglycinate (not sulphate) – helps metabolize carbs, protein and fat, helps develop and maintain healthy bones and teeth, helps with tissue formation and maintenance of proper muscle formation, insomnia and normal formation of stool – from health food store, start with dosage on the bottle and increase for desired results.
Skin Care & Wound Management in Scleroderma presented by: Alexandria Crowe
Alex is the Skin and Wound Care Specialist at St. Joseph’s Healthcare Hamilton. She is also part time faculty at McMasters University in the School of Nursing. Alex is an Executive Member of the Ontario Wound Care Interest Group.
- Skin is thick, dry, tight and prone to damage and infection.
- Emollient creams and ointments that may prove helpful are Aveno, Euchern, mineral oil, petroleum jelly, and PH balanced products if you can find them.
- Avoid products that contain Vit A, Vit C, alpha hydroxide acids, retinol, retinoid and retin as well as sodium lauryl sulphate.
- Keep warm, no smoking, get rest, have tight control of blood sugars & hypertension
- Treating ulcers – control pain, it helps with healing, control infection (healing will not happen if there is infection) if it’s dry, wet it – it it’s wet, dry it. Betadine has proven to be helpful and Manucca honey is good as it kills bacteria and cleans the wound.
Pulmonary Arterial Hypertension presented by: Dr. Lisa Mielniczuk
Dr. Mielniczuk is an Associate Professor of Medicine at the University of Ottawa and cardiologist at the Ottawa Heart Institute. She is also the Medical Director of the Pulmonary Hypertension Clinic.
- Blood vessels in lungs narrow, right side of the heart has trouble pumping blood and hence heart failure.
- Awareness is increasing but diagnosis is slow in coming.
- GET TESTED even if you don’t have symptoms – pulmonary functions, echo cardiograms, ECG, blood work, chest x-ray and lung CT (most of these every year)
- Several new meds, all work well, this is an era where treatment is aggressive, if it isn’t working, another may be added, 2 meds at once is better
- Lung transplants are possible in select patients who have no other complications from scleroderma.
- Scleroderma “Crest” most likely will get PAH – “Systemic” most likely have it.
The Scleroderma Society of Canada is lending our voice and support to Canadians living with pulmonary arterial hypertension (PAH). The challenge we currently face is that access to an important drug for Pulmonary Arterial Hypertension has been restricted by the Canadian Agency for Drugs and Technology in Health (CADTH).
CADTH has released its Therapeutic Review Recommendation Report for Drugs for PAH restricting physicians’ ability to exercise clinical judgment and apply newer treatment options for PAH like Opsumit (Macitentan).
SSC developed an advocacy postcard and asked for help in advocating to our provincial and territorial governments to ensure that all Health Canada approved PAH medications are accessible to patients at diagnosis and beyond.
These postcards were given out at our Support Group Meeting in October and last week SSC had received over125 signed postcards back from Saskatchewan. These will now be sent to our Provincial Health Minister. Thank you to all who took postcards, had them signed and sent them back. I’m sure the PAH patients are pleased we took a stand for them.
SASK Meeting of October 17, 2015
- The fall meeting of SASK was held at the Wascana Rehabilitation Centre in Regina on October 17, 2015, with 16 members present, several of them recently diagnosed.
- Louise Goulet will continue as President until April, 2017. A new President will then be elected.
- A new Scleroderma Society of Canada (SSC) magazine will be published twice a year. The former magazine originated in the United States.
- The treasurer’s report was presented from Steve Foster. The current bank balance is $11,697.30.
- Louise Goulet reported that Shirley Gillander and Joyce Kellington have been calling those on our contact list to find out if they are still interested in receiving information from our organization.
- In new business, SSC has adopted a logo to be used across Canada – “Hard Word. Harder Disease” – which can be used on caps, t-shirts, etc. There is a great need to increase awareness of scleroderma in the general public, as well as with medical professionals.
- Members were asked to assist in the distribution of postcards regarding medical coverage for treatment of patients with pulmonary arterial disease. These will be collected and forwarded to the Minister of Health, Dustin Duncan. Pamphlets and Scleroderma Voice were also distributed.
- SSC wants provinces to connect and support each other in spreading awareness and in encouraging education through social media. Annual fundraising walks can be coordinated across Canada in June.
- Our guest speaker was Tony Schmalz, who specializes in massage and low-level laser therapy. Laser therapy is healing with light. The low-level laser therapy treats the pathology or root causes, not the symptoms, and accelerates the body’s natural healing process.
- Suggestions for future guest speakers and items for the newsletter are welcomed. The next meeting will be April 16, 2016, with the next fall meeting scheduled for October 15, 2016.
SASK Fundraising and Awareness Items:
We have the following available:? Floral note cards: There are 8 different floral designs in each package. 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
Please contact Louise Goulet (306) 584-1950 or Janet Campbell (306) 757-0962 for more information or to place an order.
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 f you qualify. Try to look at getting the placard as a way to make your life easier.
Scleroderma Association of Saskatchewan Executive
Olga Sereda?Phone: 306-693-1936
No email address
Corresponding Secretary Newsletter co-Editor:
Phone: 306-757-0962 email@example.com
The Scleroderma Association of Saskatchewan would like to thank the following organizations for donations:
Muenster and district donor’s choice
Gainsborough donor’s choice
United way of Regina
Fraternal Order of Eagles Ladies Aux. Regina
Broadview donor’s choice
Three R’s to follow:
Responsibility for others,
Responsibility for self,
Responsibility for your action