My Family’s Autoimmune Disease Journey Is the Tie That Binds
People are social creatures who thrive when nurtured, and when our achievements — such as weddings, graduations, promotions, and new babies — are celebrated. But when challenges arise, a supportive foundation can prove even more valuable.
After I was diagnosed with granulomatosis with polyangiitis vasculitis in 2005, the nonprofit Vasculitis Foundation became an invaluable resource for me. Its staff and volunteers are dedicated to providing patient support, and I’m grateful for what I’ve learned from them about my illness, as well as for the connections I’ve made with physicians and other patients.
When challenges arise, it’s also indispensable to be able to lean on a circle closer to home — one’s own family.
When I was struggling with the onset of symptoms, doctors asked my parents about their own medical histories, going back two generations. While it took five months to get diagnosed, doctors were able to settle on an autoimmune disease fairly quickly, given what they had learned about my family’s genetic predisposition to autoimmune disorders.
My father has battled episodes of Meniere’s disease his entire adult life. When we were kids, my siblings and I would see him lose his balance and fall to the floor in the middle of a play session in the living room. It didn’t happen often, but I’ve never forgotten it.
One of my dad’s sisters died from pneumonia. Of his two surviving sisters, the oldest has Crohn’s disease and colitis, while the younger one has antiphospholipid antibody syndrome. Among the seven grandchildren, four of us experience vasculitides and thyroid issues, with one having symptoms that are similar to my dad’s.
While it hasn’t actually been proven that there is a genetic link to autoimmune disease, we always flash a wry smile when doctors mention it. In our family, it’s four out of four siblings and four out of seven grandchildren. We have all the proof we need that autoimmune disease runs in the family!
While studies have shown environmental triggers and other external factors can trigger inflammatory responses, to us there’s no questioning the hereditary component.
Because of our common experience, my family members have all been willing to speak up about our diseases, to help make the general public more familiar with them, and to advocate on behalf of treatment for chronic illnesses. This is what I mean about having a supportive network that’s close to home.
It is comforting to me that I’m not alone or the only one experiencing weird symptoms. Having my family behind me, and with me, helps me to weather medical setbacks. And it helps me to encourage others — especially those who might not have the support of their family like I do.
The more we all help one another through our health journeys, the more we are able to better make our way through our own.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.