Emily's Story

DC area

Age: 16-24

A little bit about my journey:

My Diagnosis

Ehlers Danlos Syndrome

Time to Get Diagnosed

18 years old

Year I was Diagnosed


Sending Love to

Dr Alissa Zingman<3

Hospital I'd Recommend

Children’s National DC

This is my story:

Growing up, my stomach was my biggest problem. I got pneumonia when I was 10 years old, which led my stomach to reject anything I tried to eat after multiple rounds of antibiotics and steroids. After that, I was in and out of hospitals and dependent on an NG tube for 1.5 years. After relearning how to eat at Nationwide Childrens in Ohio, I had a considerably normal childhood, aside from seemingly usual sport injuries, “growing pains” and mild food sensitivities. My story with EDS didn’t start until I was 18 when I started having pain in my TMJ. By chance, the maxillofacial oral surgeon asked if we had ever heard of EDS. As soon as my mom and I got home, we looked it up and immediately knew that this is what I have. I was diagnosed by a geneticist a few months later. Nowadays, my main issues are my neck and jaw. Despite my setbacks, I am still a thriving college student at University of Colorado studying physiology in hopes of pursuing a job in medicine.

Let’s play 20 questions:

The song that keeps me going is:
I never leave home without my:
My go-to feel better movie is: 
If I was in the hospital, the celebrity I would most love to visit me would be:
When I need to relax, I:
My favorite food is:
The quote that keeps me going is:
Everything happens for a reason
When I need a laugh, I:
Meet my pets (or favorite stuffed animal):
My hero is:
When I’m having a down day I binge watch:
My favorite book to get lost in is:
The Power of Now
I want to be best friends with:
The thing I’m most proud of:
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
The most hilarious thing that has happened to me is:
It really means a lot when someone does this:
My favorite social media account to follow is:
The advice I would give to myself back at the beginning of this journey would be:
Words of encouragement that I’d give to my fellow warriors are
Follow my journey:

Submit YOUR Story!

You May Also Like…


Submit a Comment

Your email address will not be published.

Pin It on Pinterest

Share This