Welcome to Living with the EDS Cluster. I’m Erin, and I’m a zebra!

I have been living with the EDS Cluster since birth, but I didn’t know what it was called until I was 37 years old! (More on my diagnosis story here) I went looking for a community of people who were dealing with what I was dealing with, but didn’t find exactly what I was looking for – so I decided to create it myself!

While I am not clinical myself, I do have a PhD degree in healthcare management and biostatistics. I work within the healthcare industry and know how the industry works. I also know how we can help ourselves in this industry, given all the challenges we have as zebras.

My goal with this site is to share my stories, my tips, and my journey with other zebras and zebra lovers. Additionally, I hope to create a space where we can all come together and create a community of zebras, trying to improve our lives and health.

I’m so glad you are here! Stay awhile, read through the posts, and add some comments! You can also join our weekly email group here.