Exciting news!
The next Support Group meeting, scheduled for Saturday, April 27th, will be IN PERSON!
The meeting, “Easing our day-to-day living”, will be held at the St. Boniface Library, 100-131 Provencher Blvd. in Winnipeg.
We’re looking forward to seeing each other in “real life” once again. Full details are available on the Support in your community page.
REGISTER HERE!
The 2023-24 Scleroderma Manitoba Board of Directors still looking for volunteers – Join us!
Three new members joined the Board at the AGM in September and three others have moved on. We welcome Mridul Bhargava (Treasurer) Linda Cassell (Member-at-large) and Theresa Sabi (Member-at-large) to the board and say thank you to Lisa Thiessen, Crystal Smith, Ana Mariá Rojas for your service.
Jo-Ann LaPointe McKenzie has agreed to stay on temporarily as President until a new volunteer steps forward. Scleroderma Manitoba is grateful for Jo-Ann’s commitment to the organization – she’s a tremendous person!
In addition to President, the Board currently has two other vacancies to fill: Vice-president and a Member-at-large, hopefully one who has a background in education or fundraising.
If this sounds like you or someone you know, or you’d like more information, email us at sclerodermamb@gmail.com or call 204 510-2855.
Check out the new Board of Directors and read or download the AGM minutes in the Activity Reports.
Participate in SPIN-SELF
Enrollment is now open for SPIN’s scleroderma self-management program. SPIN-SELF is a program designed to provide knowledge and skills for managing physical, emotional and social consequenses of scleroderma.
Participants get access to 9 self-management modules and receive $100.
Visit the SPIN website to learn more.
New! Educational sheets now also available in French
We continue to add new information sheets related to living with scleroderma and now Scleroderma Quebec has provided us with French versions as well.
Access the English versions here. Accédez aux versions françaises ici.
New addition to “Our Stories”
Alex Tahimic’s story of his late mom and how he ran the 2023 Manitoba Marathon in her memory has been added to the other stories of scleroderma patients and caregivers.
Take a moment to watch Alex’s video and read the other stories here.
SclerodermaNews.com
Scleroderma News is “The Web’s Daily Resource for Scleroderma News.”
It’s a good site to bookmark for the latest in research and information about scleroderma.
Scleroderma Manitoba’s Support Group is there for you.
Scleroderma Manitoba hosts support groups for scleroderma patients, their families, and their supporters.
We are holding online support groups due to Covid-19, but hope to return to in-person meetings some time in 2024.
Upcoming meeting dates and details are available here.
Did you miss a previous Support Group meeting?
Find summaries and resources from previous meetings on the Support Group page.
Scleroderma Manitoba Research Grants
Information and applications for Research and Professional Development grants are available here.
Thank you from Dr. Brett Thombs and SPIN
Brett Thombs, Director of the Scleroderma Patient-centered Intervention Network (SPIN) has written a letter of thanks to our scleroderma community regarding COVID-related research.
Read Dr Thombs letter here.
SPIN Progress Report
The Scleroderma Patient-centered Intervention Network (SPIN) has released their Progress Report. Read more about SPIN here.
Welcome to Scleroderma Manitoba
Whether you are newly diagnosed or have been living with scleroderma for some time, or if your spouse or partner, child, parent, or family member has been diagnosed with scleroderma, or if your friend, co-worker, or employee has scleroderma, YOU are a part of the scleroderma community in Manitoba.
This site is here to help you find support and to learn more about scleroderma, current research, advocacy and ways to volunteer.
Click here for information about COVID-19 vaccination for scleroderma patients.
The Bulletin
The Fall/Winter edition of The Bulletin has arrived. Click here for details.
About Scleroderma Manitoba
Read more about Scleroderma Manitoba and its Mission here.
Research
Find the latest information on scleroderma research here.
Get involved
Check out volunteer opportunities and ways to donate.
What is Scleroderma?
Scleroderma (systemic sclerosis or SSc) is a largely misunderstood chronic disease affecting about approximately 22,000 Canadian and five to six times more women than men are affected by this disease.
Scleroderma is an autoimmune disease, a condition in which a person’s immune system turns against itself by producing antibodies that attack its own tissues (i.e. autoantibodies).
The word “scleroderma” is derived from the Greek words “skleros” (hard) and “derma” (skin) and is characterized by progressive skin hardening.
Scleroderma is characterized by an overproduction of collagen and damage to the blood vessels that causes excessive scarring within the various organs. This imbalance leads to a hardening of the skin (fibrosis) and an alteration of the affected organs.
Moreover, in most cases scleroderma limits the motor skills and dexterity of those affected and causes great physical and psychological suffering since it produces disfiguring appearance-related changes. Learn more.
