Hello. I am Sydney. I am the youngest of the group. Just like the other girls you've read about here I have Ehlers Danlos Syndrome along with some of the other co-conditions that can go along with EDS. I was about 11 when I started having really bad back and leg pain. For a while we couldn't pinpoint what it was. It wasn't until my mom (who has Ehlers Danlos and other co-conditions as well) was being tested for Tethered Cord Syndrome that she realized this might be the cause of my problems. So a week before my 13th birthday we met with my mom's neurosurgeon who deals with complicated EDS patients to see if this was really the cause and if this was my next path in life. He informed us that there was much more going on than we thought. I did have tethered cord but it was "hidden" meaning you could not see it on an MRI. I also had a small syrinx, scoliosis, and several levels of my spine that were unstable, but he thought the tethered cord was the most crucial at the time. However, he could not perform surgery on anyone under the age of 14. He suggested we go and find another doctor because he felt a year was just too long for me to wait. For the next year we searched for a doctor to detether my cord, but most said that I was faking or it was all in my head or my case was to complicated for them. I ended up in a wheelchair, and we went back to the my mom's neurosurgeon. Since it was only a month until I turned 14 we scheduled surgery for the week after my birthday. I thought I would bounce back, get to being a kid again and run around the yard with my sister and the dogs. I soon learned that was just not the plan for me. I had to learn how to be a kid with limitations. I went from running to falling, from walking to being in a wheelchair, then using a walker and back to walking on my own again. I was learning how to live with this new normal.
That's when the pain began to get worse. I started losing feeling in my legs again. Not knowing what was happening we went back to Maryland to see if we could figure it out. My entire spine was unstable. My neurosurgeon informed us that Maryland had changed a law and at his hospital he could not operate on anyone under the age of 18. I was only 14. He gave us a couple of referrals, but all of them said I was either too complicated or it was outside their wheelhouse. For 3 years we have found doctors who will help manage and maintain my health. We are waiting until I am 18 to finally have surgery to stabilize my spine.
This has been a long and twisted journey with lots of doctors and lots of diagnoses. I know it's not over and there will be more surgeries in the future. But that's okay, because I know God put this path before me for a reason. Along the way the greatest gifts to come out of all of this hard are the friendships we've formed with others who are going through the same things and even more. I can't wait to spend a time with my friends on the beach! I have never looked forward to something so much in my life. I am very thankful for Mrs. Monica and everyone who is helping with this. retreat.