Meet the Team

Christina Doherty

 
Christina1
 

My Zebra Journey - Moving Forward

Hey guys! Please allow me to introduce myself. I’m Christina, I’m 21, and I am an artist and a video blogger. I also love to read, I love theater, fashion, and playing music... Oh, and I’m also a full time patient. I have Ehlers Danlos Syndrome.

For me, EDS started to rear its ugly head at around the age of 10-11. Up until then, I had been a competitive gymnast and I never really saw my "flexibility" as something out of the norm. Looking back, there were a lot of red flags. But at the time we had no reason to believe that they weren't just quirks, and I also didn't really even know how to express what I was feeling since I had never really known anything different. It’s hard to explain pain when it’s all you have ever known. So, like I said, age 11 is about when we started looking for answers. But it wasn't until I was 17 and had already undergone a failed brain surgery (Chiari Decompression), that I finally got the right diagnosis. And that was only because I had come across it by pure luck in my own research and booked myself an appointment with a geneticist.

I realize that my story isn't unique, although I wish it were. There are likely many of you reading this who see yourself in my story ~ years of searching with few answers, living a life of pain that nobody can explain, and having to ultimately take your health into your own hands. And unfortunately, I’m sure, like me, many of you were told at some point that it was all in your head or just anxiety related. That seems to be doctor speak for "I don't know." It shouldn't be that way. I know it isn't fair but, realistically, that is how it is right now.

I wish I could say that everything was all uphill after my diagnosis, but really my life went into a tailspin. While I had spent all those years searching for answers my body had literally been falling apart and left us scrambling to try to put the pieces back together before the next thing went wrong. Now I live with a completely fused spine, a stent holding open my jugular vein, a feeding tube for my nutrition, and a port in my chest for my hydration. Not to mention the hours of therapies every day and dozens of medications I need to take to keep me alive. But I am nothing but thankful for these lifesaving measures and my ability to be able to travel to see the specialists my care has required. I try not to take any of that for granted and am getting better and better each day as I work hard in my recovery.

I feel extremely fortunate to have gotten a diagnosis when I did and to have all of these amazing treatments available to me, but part of me often wonders what it could have been like if we had just known earlier what we know now. I wonder how much damage could have been prevented if only I had known. This is one of the main reasons that I have thrown myself into advocacy, awareness, and patient support and so highly encourage early diagnosis and intervention. 

When I was first diagnosed, I scoured the internet looking for someone like me ~ someone who understood what I was going through. But I came up empty handed. So now that I am in a more stable place, I realized I was going to have to be that person for others. I owed it to my past self and to all of the people who have helped me over the years to make it this far. I started sharing my life on my Instagram and then eventually through YouTube videos. I try to make the videos that I wish that I had had at the beginning. It’s never something I thought I would do (I’m actually quite camera shy), but the experience has been incredible! Let me tell you, the community online is absolutely amazing! I think of all of you guys as my friends and, even sometimes, family. I am so thankful for social media. It has given me companionship when I can't even get out of bed, information when my doctors and I are at a loss and, most importantly, social media has given us all the opportunity to make our voices heard.

EDS is becoming more commonly diagnosed and that's no coincidence. Patients are reaching out to other patients who are still searching for answers. It’s truly inspiring to see. My hope is that as The Zebra Network continues to grow, it will provide just another platform and safe space to make our stories heard and to receive the information we need to continue on the right path in our health journeys. It can be so confusing to navigate! And so many doctors are still totally clueless.

Honestly though, I feel excited and proud to be on the cutting edge of so many new advances in treatment for EDS as well as many of its common associated conditions. Even over the last 5 years, so much has changed for the better. Every day there is more and more hope for patients like us. New research is being done, new treatments are being approved, and more doctors are being educated. So don't you dare lose hope and don't stay silent. The only way that anything is ever going to change is if we demand it does!

 
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