EDS Ehlers-Danlos Syndrome was a diagnosis given to me while in the hospital for my hip replacement surgery; the clinical team diagnosed me. I qualified for this clinical diagnosis due to my history of orthopedic surgeries as well as my joint hypermobility, frequent dislocations, and chronic joint pain.
According to elgers-danlos.com, 12 out of the 13 EDS types can be identified through genetic testing. I have an appointment scheduled in November for the genetic testing for the specific EDS subtype. According to my primary care doctor, the genetic testing is important to rule out the more serious subtypes of EDS, such as Vascular EDS which can be comorbid with POTS.
My orthopedic surgery journey began in 2012, when I broke my big toe causing Hammer Toe. Now I have a permanent titanium pin in the bone of my big toe. A specialist had to diagnose my broken big toe properly because the ER kept saying it was only a hairline fracture. I ended up walking on it for months before the podiatrist took a 2nd look and showed me on the x-rays it was a much bigger break than a hairline fracture.
During these months of not getting properly diagnosed, I was walking by shifting my weight to the outside of my foot due to the pain from the big toe. And because of this, I had to have another surgery to repair Tailor’s bunion on the same foot in 2013. I have the same condition on my left foot, but it doesn’t cause me any problems, therefore there’s no need to fix it.
Then, in 2014, I fell down the stairs in my home, but I held onto the railing, causing me to dislocate my right shoulder. This injury caused me to need my Labrum in my shoulder screwed back into place. The interesting thing about this was that they “grew” my calcium screws from my own blood. It was explained to me that the screws had to be from my blood and calcium to mimic bone and not get rejected by my body.
Then, after almost being healed from this SLAP Tear repair surgery, I fell on concrete stairs at my college and landed on my upper bicep which tore at the tendon. I went back for more surgery where they put a titanium bicep chain and anchor into my right arm and shoulder.
Thankfully, I recovered well from both surgeries and since I’ve fully recovered, I tend to forget that chain is even in there. I have full range of motion and it’s almost as if the injuries never occurred.
When I had the fall on the concrete stairs, I also broke cartilage in my right palm. There was no fixing it and the damage was great enough to cause constant bruise and pain. The surgeon could only do debridement (removal of the damaged tissues) of my injuries to allow for the movement of the surrounding cartlidge and reduce the pain I was in. Now, sometimes my palm will still bruise when I push open a door too hard, but for the most part I am free of pain or complications.
In all, I have had 10 or more orthopedic surgeries and all of them had to do with connective tissue damage or injury. Because of these surgeries and having hypermobility in most of my joints along with chronic joint pain throughout most of my body, is why I qualified for a clinical diagnosis of EDS.
The biggest thing I need to do is to follow through with strength training because my muscles will need to stay strong to help keep my body together. The other major thing I need to do is to follow through with the genetic appointment I have scheduled for evaluation and genetic testing to rule out more serious subtypes of EDS.
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