This will be a sharing meeting on Zoom. If there is a topic you are interested in, please contact Debbie via email at drobit@hotmail.ca or by phone or text at 204 396-2336.
A diagnosis of scleroderma is scary. That’s why it’s so very important to learn as much as you can and connect with others who understand what you are going through.
Scleroderma Manitoba hosts support groups and educational events for scleroderma patients and their families and supporters.
Whether newly diagnosed, or have been living with scleroderma for some time, it is extremely helpful to get to know others who are living with the disease, ask questions, share concerns, ideas, learn some tips, and support each other.
We have been meeting on Zoom since the beginning of Covid, but we had our first in-person meeting in April.
We hope to have in-person meetings in the warmer months, when it is easier for people to travel.
Other meetings will be on Zoom, where you can join by computer or over the phone using the link or number sent to you when you register.
April 2024 | Easing our day-to-day living
This was our first ‘in-person’ meeting since the beginning of Covid, and featured a presentation by Diamond Athletic. A video of the meeting is available here.
January 2024 | Financial Literacy
Do you wonder if scleroderma is preventing you from qualifying for borrowing, getting personal coverages or from retiring with a comfortable lifestyle?
You are always in control of your own destiny, and Kevin Pickle from Co-operators showed us better ways to care for loved ones financially and ease concerns moving forward, including:
► Qualifying for loans, mortgages and other credit products
► NEW First Home Savings Account (FHSA) & First Time Home Buyers Tax Credit
► Qualifying for personal coverages to protect you and your loved ones
► Registered Disability Savings Plans (RDSP)
► Guaranteed Issue Coverages & alternatives
► Restrictions for travelling
Please contact Kevin if you have any questions:
Kevin Pickle
Cooperators
204-949-3410
November 2023 | Sharing our lived experiences
November 25th, 2023
Patients and family members met to discuss all our current concerns and share possible solutions.
April 2023 | Yoga for scleroderma
April 22nd, 2023
Three instructors from Yoga for Scleroderma led us through an amazing session that included several poses, stretches and relaxation exercises specifically designed for those living with scleroderma. A video of the session is available here.
There are many resources including videos and useful tools and where to find them on the Yoga for Scleroderma website.
They also provided this list of free resources and we encourage you to check them out!
January 2023 | A New Year of Opportunities
January 7th, 2023
Patients, partners, family members, supporters, and caregivers met to welcome the New Year. Attendees asked questions of each other, discussed challenges, accomplishments, ideas and experiences and got to know each other better while providing support to each other.
September 2022 | Facing fear – Living with a chronic disease
September 17th, 2022
Scleroderma patients and family members met together for a very meaningful discussion of our feelings and emotions related to living with scleroderma – including our initial reactions to a diagnosis (which included denial, fear, anger and grief) to the ongoing emotional journey of acceptance and coping.
Attendees included those who have been recently diagnosed as well as those who have been living with scleroderma for some time, and a significant age range was represented.
Eleanor Adaskin, a nurse with over 40 years of counselling experience joined the group to assist in facilitation, and to offer her advice and reflections to the group.
A list of resources has been developed which includes books, online resources, and a partial list of info regarding local counselling services to assist those looking for help in coping with the emotional toll of scleroderma and maintaining or improving our emotional and mental well being.
The resource list is available here.
April 2022 | Benefits of myofascial release & movement in scleroderma
April 23rd, 2022
Physiotherapist Jaime Angus discussed the benefits of myofascial release and the importance of movement in those living with scleroderma. She walked us through an excellent presentation about what fascia is, its importance in the body, how it can be affected by scleroderma, and practical information and practices to help keep the fascia supple and stretched.
Whether you are a patient, supporter or family member, we are sure you will find the practical demonstrations for posture, breathing, gentle movement, and fascia release helpful.
A recording of the presentation is available here.
January 2022 | Small group discussions
January 22nd, 2022
On Saturday, January 22, approximately 20 community members joined together on Zoom for small group discussions.
After introducing ourselves and a brief practice session with online breakout rooms, we separated into groups to discuss different symptoms of scleroderma including fatigue, lung issues, gastrointestinal issues, Reynaud’s and joint pain and stiffness.
Meeting in a smaller group enabled us to share our experiences, ask questions, and compare coping strategies. The groups shared many coping strategies.
A full summary of the discussions can be found here.
November 2021 | Webinar - Scleroderma can be hard to swallow
November 20th, 2021
This very informative webinar featured a look at the effects of scleroderma on the mouth, throat and esophagus, what to watch for, and potential treatment.
Dr. Ada Man, Rheumatologist at the Manitoba Clinic and Assistant Professor at the University of Manitoba presented a general overview of the effects of scleroderma on the mouth, upper and lower GI tract, followed by Dr. Matthew Woo, Consultant Gastroenterologist at the South Health Campus, Calgary, Alberta and Clinical Lecturer in the Division of Gastroenterology at the Faculty of Medicine, University of Calgary, who discussed diagnoses and treatment of common GI issues. Presentations were followed by a Q and A session.
If you missed this presentation, a recording of the webinar is available here.
Read the biographies of our presenters:
Dr. Ada Mann
Dr. Man completed her Internal Medicine residency at the University of Toronto and her Rheumatology residency at the University of British Columbia. She spent two years at the Boston University Scleroderma Research Center for a research fellowship with an emphasis on epidemiology.
Her research was focused on cardiovascular outcomes, interstitial lung disease progression, as well as patient reported outcome measures in scleroderma. She and her team developed the SSPRO – Scleroderma Skin Patient Reported Outcome – which has been validated in and is used in clinical trials.
Dr. Man practices General Rheumatology with a special interest in scleroderma at the Manitoba Clinic in Winnipeg and is an Assistant Professor of Medicine with the University of Manitoba. She is a member of the Canadian working group for stem cell transplant in scleroderma and represents Rheumatology in monthly multidisciplinary rounds for interstitial lung disease.
Dr. Matthew Woo
Dr. Woo is currently a Consultant Gastroenterologist at the South Health Campus, Calgary, Alberta and Clinical Lecturer in the Division of Gastroenterology at the Faculty of Medicine, University of Calgary, Alberta.
He completed his MD, medical residency and adult gastroenterology fellowship training at Queen’s University, Kingston, Ontario. Thereafter, he completed an advanced fellowship in Gastrointestinal Motility at the University of Calgary.
Dr. Woo currently serves as co-director of the Gastrointestinal function lab at the University of Calgary and is program director of the Gastrointestinal Motility fellowship at the University of Calgary. His research interests include clinical and diagnostic aspects of gastrointestinal motility, connective tissue disease and functional anorectal disease.
May 2021 | SPIN Programs Update
May 15th, 2021
Click here to hear a recording of Dr. Brett Thombs’ presentation to Scleroderma MB regarding the Scleroderma Patient-Centered Intervention Network (SPIN) and an update on research and online programs available to scleroderma patients in Manitoba.
