Rare but not alone

Ashley Eakin, a filmmaker, is being brave and showing her real self online. She does it on behalf of the kids who share her rare condition so they can see themselves, in her image — a beautiful example of how the internet can be a bridge to hope and inclusion. Watch:

When she mentions in the video that there are only 200 documented cases of people with her disease in the world I was reminded of Burt Minow, who lived for years without knowing that there were others like him. As I’ve written before:

Studies show that our emotional and physical health improves when we are given the chance to communicate with others who share the same conditions or life challenges. And, after 15 years of research, I have found that the internet’s most important contribution to health is not access to information, but access to each other.

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 collaborate, to compare notes, and to solve problems together. But because this connection is not a drug or therapy with a marketing campaign, only a small group of people are reaping the benefits: getting diagnosed more quickly, identifying better treatments, preventing complications, or simply finding the spiritual strength to keep going on with life.

Let’s keep working toward the possible future when everyone can find their “just-in-time someone-like-me” or a whole community of people to help navigate whatever challenges they face.

Featured image: “between the flags” by Nicolas Alejandro on Flickr