When we get sick or face a new challenge in our lives, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us.
That’s one of my core beliefs, based on the fieldwork and research I’ve done over the last two decades.
Rare diseases are perfect examples of the potential of peer-to-peer health care. Pre-internet, it was incredibly difficult to find even one other person who shared your one-in-a-million diagnosis. As I’ve written before:
At no other time in history have we been able to communicate across the world, in an instant, with anyone and everyone who has knowledge and experience to share. Never has it been so easy to solve problems together. When it comes to your health, your community may be your superpower.
I have a friend who was recently diagnosed with Zollinger-Ellison syndrome. The family members are so scared. They want more information and are not finding it. They want to find an online community or others with this condition. Can you help?
I’m sorry to hear about your friends’ diagnosis — and sometimes even worse, their worry. Just in case they haven’t yet searched or contacted these groups:
- NIH NCATS which is the rare disease hub for NIH — they sponsor the Rare Disease Day symposia, for example.
- EURORDISIn addition to consulting Dr. Google for Zollinger-Ellison sites, I’d look for “adjacent” diagnoses and groups. Sometimes people with similar types of conditions find it useful to compare notes. I’d also search Facebook — there are thousands of public and private (secret even) groups for various health conditions. Ask clinicians if they know of other patients and families that they can connect with. Write to researchers asking the same question. Matt Might is an inspirational person to follow when it comes to rare diseases [because he and his family went from undiagnosed to gathering an international group of fellow patients to leading research for treatments]. Here’s an article about his journey. There are many more!
Previous case study: Brain surgery.