Scleroderma
Roger Gignac introduced Jeanette Brunelle. She said she wanted to introduce us to a rare disease. The Scleroderma Society of Ontario became an independent charitable organization last year after working under the auspices of the Arthritis Society for 23 years. It is managed entirely by volunteers who organize the efforts of 21 support groups across the Province which mentor those who are living with it.
Scleroderma is an Autoimmune Deficiency disease, like Lupus, which causes a hardening and thickening of the skin and organs such as the lungs. Localized Scleroderma is a slower acting version but systemic moves very quickly. Diagnosis is difficult because often overlapping conditions exist and tend to confuse. There are limited treatments and no cure. Women suffer it at a rate 4 times that of men. A patient can go into remission but the symptoms will persist.
Symptoms include swelling of joints, muscle pain, difficulty swallowing, GI tract difficulties, marked differences in Blood Pressure which is very hard to control and which can lead to kidney failure. Survival rates are improving through advancement in understanding and some drugs but they are very costly and the Province doesn't always pay for them. There's a quarterly news letter and June is Scleroderma month. Hamilton and Mississauga branches hold large fund raisers then.
Jeannette nursed for 30 years but since contracting this has only been able to work a bit and with new symptoms appearing constantly, will have to take early retirement. She says it's been a real adjustment, going from 12 hour shifts to not being able to move. They haven't linked the disease to genetics but her nephew got the systemic strain in his teens and died at 28 of heart failure. It took 4 years for them to diagnose her.
She is learning to cope, she's thankful for the support of the Arthritis Society and the information they provide. She follows the exercises they recommend and has done watercize but now does tai chi and constant therapy makes it manageable but the pain persists. She has a bolster that keeps her head raised while she sleeps to avoid bronchitis. Tissues tighten while she sleeps. Cold is very difficult to tolerate - it brings on coughing spasms.
Attendance at a recent convention inspired her to keep going, let her know she was not alone. There is now a small support group here - 7 people who share their experiences and support each other. She works to keep her family life normal, encouraging her children to pursue their dreams and not tie themselves to her so when they moved out she took in some international students which keeps her active and she volunteers at the Penetang hospital, takes distance education and belongs to a quilting club.
Her daughter lives in Calgary now and is a runner who has been taking part in the Disney Half Marathons - two a year, one on each coast - to help raise money for research. Jeannette and Lynn went to Disneyland in January and Lynn did the run. They pay their own expenses so support goes to the Society. Jeannette had some slides of Lynn's experience.