Dr. Brett Thombs and Dr. Marie Hudson help those with this rare disease through the Scleroderma Patient-centered Intervention Network (SPIN) and other research

Scleroderma is an illness that divides people into two camps: those who know nothing about it and those who know more than they ever wanted to.

Because it is a rare disease, affecting barely more than 20 out of every 100,000 Canadians, most people don’t know it at all. It is an autoimmune disease that causes a buildup of collagen (scar-like tissue), which results in tightening and hardening of the skin and other tissues such as blood vessels, internal organs such as the heart and lungs, and the digestive tract. The name is derived from the Greek words for, literally, hard skin.

For those with it, it brings a heavy burden and many health challenges. The Jewish General Hospital is the home of extensive research efforts and an innovative program to help patients called SPIN, the Scleroderma Patient-centered Intervention Network, led by psychologist Dr. Brett Thombs.

Dr. Thombs has been working with people with scleroderma since 2007. Just a few years after he started this work, he led an international group of researchers, people with scleroderma, and scleroderma patient organizations to create SPIN. SPIN is dedicated to conducting high-quality research on problems faced by people with scleroderma every day and providing important information and programs to help them live better. To achieve this, SPIN is an innovator in involving people with the disease in its research to create solutions for managing the disease.

Funding programs on scleroderma

The JGH Foundation has been an ongoing funder of the SPIN program, supporting its innovative offerings to patients not just at the JGH but across Canada and internationally. Today, JGH Foundation funding pays the salary of a full-time coordinator to oversee many aspects of the program, but in the past helped finance the creation of SPIN’s tool dissemination platform, SPIN-SHARE, and its many innovative education tools and research programs for patients.

Because there are, as of now, few treatments available to treat scleroderma, SPIN has created other ways to help patients manage their disease. For example, it developed a hand exercise program to combat the skin-hardening issues that often are very challenging for patients in their hands and fingers. The online toolkit provides four modules of different types of exercises demonstrated with instructional videos to improve hand function and helps patients develop a personalized program, set goals and track progress.

Patients participate in developing SPIN’s programs, and delivery of many of SPIN’s educational and disease-management programs are done by trained patients, often along with healthcare providers. “We’re the only group in rare diseases that partners so closely with patients and patient groups around the world,” said Dr. Thombs.

He highlights the importance of community. “A study of 800 patients showed that while the COVID-19 pandemic struck people with scleroderma hard, there was a lot of resilience in the community, despite special challenges, and people did a lot to help each other out,” said Dr. Thombs.

Dr. Marie Hudson leads scleroderma research

Dr. Marie Hudson is a member of the SPIN steering committee and works closely with the program, though her focus as a rheumatologist is on medical research into treating the disease. This takes three forms. First, there is basic research in the lab to learn more about what potential drug candidates might be effective.

The second part of her research involves studies such as her current one to evaluate how a completely novel treatment targets specific cells. The third involves studies sponsored by different pharmaceutical companies to evaluate new therapies. Dr. Hudson is currently taking part in one with a promising new treatment.

She was attracted to working in scleroderma because of its complexity and ability to affect so many different parts of the body. “It’s a great challenge to understand and work with such a multi-systemic disease that can impact many organs,” she said.

While her research is vital, she also appreciates how SPIN services assist patients right now. “Scleroderma is a rare disease, so patients can be very isolated, leading some to wonder if they are the only person with it and their problems,” she said. “SPIN helps tremendously, particularly because with its web-based programs, it reaches patients anywhere.”

Ultimately, the benefits of the program are clear.

“SPIN gives people with scleroderma a community and brings light to their condition and their needs,” she said. “We have a really strong multi-faceted research program to give people with scleroderma hope. There are a lot of things happening, so it’s a promising time.”

To make a donation in support of the Scleroderma Patient-centered Intervention Network (SPIN), please go to jghfoundation.org/scleroderma

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