Got Any Spoons?

Welcome and Thank you for joining us. We are not doctors and we do not give medical advice. We DO share our personal experiences good and bad and what has worked for us. Why do we call ourselves Zebras? Good Question. When medical students are learning how to diagnosis patients in general, they are taught to think of the most common reason for the illness. The rare diseases are just that, rare. So if it looks like a horse, it’s most likely a horse. BUT, there are rare illnesses out there. They are the Zebras. Both Amberlyn and Ann have the hypermobile type of Ehlers-Danlos Syndrome (EDS). There are 13 subtypes. You can learn more by visiting the Ehlers-Danlos Society website: https://www.ehlers-danlos.com.

Ehlers-Danlos affects every system and part of the body. Patients are often sick and see many specialists. That is where the Tale of Two Zebras comes in. Amberlyn and Ann share the EDS diagnosis and several comorbidities but their paths to diagnosis and with treatment are very different.

With such different experiences, we hope we can relate to a large and diverse number of other Zebras and offer an understanding community.