In honour of Autoinflammatory month this August, we are introducing the members of Cassie + Friends’ new Canadian Systemic Autoinflammatory Patient Advisory Group (Can-SAID). We are beginning with autoinflammatory patient and parent and Can-SAID board chair, Ian Stedman.
Ian Stedman is an autoinflammatory patient and parent. Always sick as a child, Ian had a mystery skin rash that came and went and that no doctor could identify. He had joint inflammation, headaches, fevers, bloodshot eyes and later partial developed hearing loss. When Ian had his first child, he noticed that she too had the same skin rash that he had suffered with. He was not too concerned at first, but he began to worry when his daughter stopped walking late in her first year of life. Ian started seeing specialists again, but also began to investigate on his own to try to find answers. Having become a lawyer in his 20s, Ian had developed the research skills needed to spend hours combing through the internet and medical journals for any sign of what could be causing his daughter’s symptoms. After countless hours scouring the internet and reading medical journals, Ian consulted with doctors at SickKids and both he and his daughter were diagnosed with a form of CAPS (Cryopyrin-Associated Autoinflammatory Syndromes) called Muckle Wells Syndrome (MWS).
Ian has since become an advocate for the autoinflammatory community. He joined the Canadian Organization for Rare Disorders as a board member and began to connect to others within the broader rare disease community, including at Cassie + Friends. A resident of Ontario, Ian came out to a Cassie + Friends family day where he contributed his voice and experience to help establish an autoinflammatory sub-event. Ian’s involvement in the rare disease (RD) community has made it clear to him that Canada needs to do a better job of supporting RD patients and families. Ian has recently co-founded the Canadian Autoinflammatory Network (www.autoinflammatory.ca), which will be partnering with Cassie + Friends to build a better future for autoinflammatory families, including through the work of the Canadian Systemic Autoinflammatory Patient Advisory Group (Can-SAID). This partnership is important to Ian as he recognizes the importance of an organization that is able to cater to the unique needs and challenges of pediatric autoinflammatory patients.
Not only is Ian our Can-SAID chair, but he is also a professor in York University’s School of Public Policy and Administration, the vice Chair of the Canadian Institute of Health Research’s Institute of Genetics, a legal member of the research ethics board at SickKids Hospital and, most importantly, the lucky father of three amazing little girls who wake him up every day and give him his purpose in life.
Cassie + Friends thanks Ian for his continuous and thoughtful engagements with the rheumatic disease community, advocating for those with an autoinflammatory disease. His impact thus far has been significant, and we know it will only grow from here!
Stay tuned to learn about Can-SAID, and the advisory committee members, throughout autoinflammatory month.
