To help educate and raise awareness on this rare disease, Catherine Jackson, Senior Director of Patient Engagement & Advocacy at Mallinckrodt has interviewed John Malcolmson, Executive Director of Scleroderma Canada and Scleroderma Society of Ontario. Their conversation highlights information designed to help patients and their caregivers navigate living with scleroderma.
Scleroderma, is also known as systemic sclerosis. Scleroderma patients may experience symptoms such as
difficulty with digestion, their lungs, kidneys, eyes, and even their heart. Skin thickening is one of the most
notable symptoms, but since patients may experience many symptoms, it can be hard to properly diagnose. In
fact, a proper diagnosis can take anywhere between three and five years. Once diagnosed with scleroderma,
patients face many challenges, including long-distance travel to receive treatment and feeling isolated.
While there is no cure for scleroderma, modern treatment therapies and a support team of friends, family and
healthcare providers can help patients thrive in their everyday life.
Scleroderma Canada is a nonprofit organization started by a group of patients in 1999. Their four pillars –
education, advocacy, research, and awareness – aim to provide support and essential resources to people living
with scleroderma. They create a community for caregivers and patients where they can learn more about living
with this rare disease. Additionally, they run campaigns designed to raise awareness and funds for scleroderma
research with the goal of one day finding a cure.
To find out more about scleroderma, watch and share the video below:
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