Overall there are 7,000 rare diseases affecting more than 25 million Americans, according to the National Institutes of Health. But since fewer than 200,000 people are diagnosed with any one specific rare disease, patients often feel isolated in their struggle to manage their condition.
In a recent Atlantic piece, rare disease patient Simona Supekar explains how her diagnosis of idiopathic angioedema and chronic urticaria prompted her to turn to the Internet to cope with the condition. In doing so, she found the comfort of a support network and confidence to be her own health-care advocate. She writes:
It’s this small group of people online, hailing from right here in Los Angeles to as far as England, South Africa, Nigeria, and beyond, who’ve been able to help me cope with the anvils that angioedema throws at you. People I’ll likely never meet.
Besides support, I’ve gained valuable treatment insights from them, too. The nature of this condition—that it’s idiopathic—means that doctors really don’t know how to treat it or what causes it.
But my fellow sufferers have taught me that I do have some control over this. I learned about natural remedies like nettle tea and quercetin, a bioflavonoid derived from fruits. I learned about foods that were high in histamine and salicylates and read the latest peer-reviewed articles about angioedema they shared. I learned about how simply hydrating could lessen the swelling and hives. How Reiki and acupuncture could help with the panic attacks that were now accompanying my bouts of throat swelling. How it was possible to manage this disease on antihistamines alone, as opposed to the heavy steroids I was taking.
But most of all, despite how little anyone knows about this disease and how seemingly rare it is—only about 1 in 1,000 have it—I learned that I am not alone.
Previously: Developing a Google-like search system to improve diagnosis, treatment of pediatric brain disorders, Parent details practical ways to get care and support for your child’s rare disease, When do you tell a potential partner about your rare illness? and Broken: A poem about coming to grips with chronic disease
Photo by Pascal Marmanis