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by Tracie A.
Like most with Ehlers Danlos syndromes, it took many years of seeing various doctors for all of my symptoms. It started in my younger years around 15 when my shoulders would sublux and dislocate. It became so bad I could no longer attend gym class or do gymnastics which I absolutely loved. Back then I was considered “double-jointed” and like many EDSers, I did all the “party tricks”. I figured I was just very flexible and nothing more.
As I began my journey into adulthood and got married, I also became pregnant three times with three beautiful children. During these pregnancies, I could only seem to carry until about 35 weeks or until the babies weight reached 5 lbs. This happened with the first two, which were my daughters. No one including myself thought much of it. Doctors thought it had to do with my narrow hips. We waited to have our third child around 7 years later. It was this pregnancy at age 29 in 2005 that started the real problems. I suffered from stage 3 uterine prolapse and had placenta previa so I was on strict bedrest. My son was born at 32 weeks, and it nearly took both of our lives. He did clinically die 3 times and was brought back with intervention through the NICU. I had issues with the placenta and needed a blood transfusion.
After 21 days we both returned home. That’s when EDS reared its ugly head. I had to have a hysterectomy because the prolapse was so bad I had bathroom issues. Then I began having hip and leg pain that is indescribable. I went from doctor to doctor for three years, using wheelchairs, walkers and canes and every test, every poke, every prod, resulted in “everything is coming back normal,” yet the searing, unbelievable pain in my hips would still be there.
I would search online and type in my symptoms but all that came up was this thing called Ehlers-Danlos Syndrome. I didn’t think I had this because I figured the doctors would have known. I was called a hypochondriac, I was told I needed to see a therapist because nothing was showing on my test results, therefore, it must be in my head.
If it was in my head, believe me, I would have told it to go away!
By 2008 I was a mess. Every joint was now subluxing and dislocating. Wrists, fingers, knees, hips, shoulders, ankles. Anything with a joint. One day I was in so much pain I went to the ER and told the very young resident who attended me that he either figure out what was wrong or amputate my legs (at this point just sitting was so excruciating I had to lay on my stomach) he looked at me and said ” well, your symptoms sound like something we learned in med school called EDS, but you don’t have stretchy skin.” Of course, he hadn’t bothered to check either. I went home, went into the bathroom and stretched my neck. Bingo! I never knew I could do that!
I made an appointment with my GP and told him what I thought I had and to send me to a geneticist. He had to look it up himself and said, “There is no cure and no treatment, so why even bother?” Ugh, I couldn’t believe it! I said I have children and its hereditary. I was seen by the genetics department and there it was. I was diagnosed. Finally! An answer to all my pain, all my problems, and why I had such difficult pregnancies.
While I was in between being diagnosed I went onto YouTube and was shocked. There were maybe 11 videos on it. I started making videos about EDS because I wanted to be an advocate for this unknown syndrome. Once I had the actual diagnosis I took my children to a pediatric geneticist because they all had identical symptoms I had at their age and yes, all three had it. I began making more videos on YouTube because I didn’t want anyone to go through all that I had. I never looked at it as a bad thing, but more as a positive because I had an answer and I felt lucky to have found it. I wanted to help as many people as possible! I felt if just one person was diagnosed because I put my story online, and showed all the bendy ways of EDS, it would all be worth it. Along with that journey, there was an outpouring of support, friends made, and most importantly diagnosis reached for some! I no longer make videos because there are so many out there and that in itself is awesome!
9 years after my diagnosis things have gotten much worse. A lot of pelvic floor issues, organ prolapse, hernia, gastritis, and many more that have left me hospitalized over and over, but in that time I have seen an amazing thing: so many doctors, nurses, and caregivers know what EDS is or have heard of it! The awareness has grown in ways I never imagined was possible. All three of my children now have their own stories and my son who is 12 is homeschooled due to his own hip pain being so severe. Even though all of us suffer so terribly, I am always thankful that we at least know what is wrong and how to deal with it by using braces, canes, walkers or wheelchairs.
Flare-ups for myself are becoming increasingly worse, laying me up for months at a time just from a barometric pressure change. I battle with it because I am a very outgoing person who loves life but even in the worst of my flares I still look at the positive and use humor and laughter to keep my spirits up. I do have one final wish, and that is to dedicate my body to be strictly used as a way to learn how Ehlers-Danlos syndromes affect the body inside and out. I am currently working on making that happen. There won’t be a cure or any clinical trials ready during my life, but if I can participate in research studies, that will help shed light (along with others) and help doctors and genetics come that much closer, it will benefit others including my own kids, and one day their own. I can’t possibly think of a better way to truly help.
I want to thank all of you at the Ehlers-Danlos Society for all you do for us! Between the constant updates and links, to Inspire where us EDSers can connect and support one another, your dedication to awareness has literally been something I have witnessed over the past nine years! Your caring support, your prompt response when I reach out, and your never-ending quest to help those who need it will resonate for years to come.
Gentle hugs to all!
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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