Faces of Courage. Christina

Hi there. I'm Christina, I'm 22 years old. Like the other girls who will share their stories here I have Ehlers Danlos Syndrome, aka EDS. My journey with EDS started around the age of 10. Before that I had always presented as a fairly healthy kid. I was a gymnast and thought little of my flexibility, but nearing my 11th birthday it became pretty clear that something else was going on. Unfortunately it wasn’t until I was 16, and had already undergone brain surgery for a Chiari malformation, that we figured out the root of my pain and many accompanying conditions. 

I first learned about EDS while watching an episode of 'Mystery Diagnosis.'  I made an appointment with a geneticist who confirmed I had the connective tissue disorder. Imagine the surprise of my primary care physician who had insisted my whole life that I was just a hypochondriac! After diagnosis my pain and wide-spread symptoms began to make sense. Many more surgeries were required. I now have a fully fused spine, a stent in my neck, and ultimately I have become dependent on a feeding tube and a port in my chest for nourishment and hydration. But I consider myself one of the lucky ones. I have managed to put together a really knowledgeable team of doctors and therapists. I am determined and constantly fighting to build back my strength so I am able to speak up for those in our community who aren’t as lucky.

When I was diagnosed I had a really hard time finding people my age who I could relate to and were going through similar struggles. About 2 years ago I started to share my story and my life online via my YouTube channel and Instagram. The amazing community of support that's come from the internet is more that I could have ever imagined. There were so many other people out there just like me just waiting to find that connection.

​My big picture goal is to be able to get back to school again someday, I would love the chance to help people on a larger scale. But in the meantime I opened up a small etsy shop which has actually done quite well. Art and creating is definitely what gets me through. My mediums have had to make quite a few changes over the years as my abilities have changed, but I like to look at that as a positive. It has been fun trying out different hobbies. Currently I’m on a crochet kick! Life moves on, and I count my blessings daily. Two of my favorite mottos are, “It is what it is” and “We do what we gotta do.”

​I am so touched to be invited to the “Option EDS” retreat and absolutely can not wait to on the beach with so many dear friends. It's the dream we always talked about coming true!