Was your life suddenly turned upside down by a constellation of frightening symptoms that your doctors struggle to explain? Or have you always been sick and just weathered through, with no satisfying explanations available? Do you struggle like us?
Pain deep in your bones? Major allergic reactions – but no allergen to be found? Anaphylaxis and ambulance rides, but no new food or fragrance in your routine? Rashes, hives, the ability to write on your skin? Swelling in your feet or hands, or more frighteningly in your mouth and throat? Abdominal symptoms when you eat – maybe sometimes, maybe all the time? Some of these symptoms (and many more) but not others?
Are you confused like we were?
Begging your doctor to send you to a specialist? Begging that specialist for tests? Searching the Internet for answers, not knowing what information to trust online? Wondering if the ER doctor who called in the psychiatrist was right – is it all in your head? And if it is, why do you feel it throughout your body?
Were you brought to this website through a symptom search? Or through a doctor mentioning the illness while ordering tests?
However you arrived here, you are welcome. Whether you have been given a definitive diagnosis, or are searching for answers, the Mastocytosis Society Canada (MSC) is here to help.
MSC is a registered Canadian charity that helps patients, caregivers and health care professionals learn more about mast cell disorders and to lean on each other for support. We support both diagnosed patients and those in search of a diagnosis, as well as people caring for a loved one with a mast cell disorder. We also provide information to health care professionals trying to provide the best possible care to their mast cell patients.
Here at the MSC website, you can find information on diagnosis, treatment, coping skills, work place accommodation, dietary considerations, explaining mast cell disease to others, and more.
As we approach the second annual International Mastocytosis and Mast Cell Diseases Awareness Day on Sunday, Oct. 20, MSC invites you to join our community and even consider becoming a volunteer.
It’s a club we wish no one had to join – and for some, it may only be a stop on the road to a different diagnosis. But for those who know they have mast cell disease, and for those still searching, we are here for you. You’re one of us.
Cindy MacDougall is a communications professional, mother of four and military spouse living in Victoria, BC. A former health reporter for CBC Radio and former newspaper columnist, Cindy has lived and worked throughout Canada.
Disclaimer: Each story submitted to Mastocytosis Society Canada for this blog is published as-is with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors and does not necessarily represent the views and/or endorsements of The Mastocytosis Society Canada, its leadership, boards, or communities. We can also not confirm any medical claims or comments in the story.