In the past year, I have been struggling physically with the challenges associated with Ehlers Danlos Syndrome. Through this process I decided to start this blog to share my journey, help me get things off my chest and connect with others going through the same challenges. I needed some creative outlet and this seemed to be the best option.
What is Ehlers Danlos Syndrome?
Ehlers Danlos Syndrome (EDS) is a genetic condition that weakens the connective tissue in the body. These ligaments provide the structure and support to the joints, skin, blood vessels, and internal organs.
Connective tissue relies on proteins like collagen to stay strong. EDS changes how my body makes or uses collagen, often making the tissues loose, stretchy and fragile.
The common symptoms can vary between individuals. The most common are, joint hypermobility causing frequent partial or full dislocations, skin stretching further than usual, fragile tissue that results in easy bruising, tissue tears and slow to heal, chronic pain, and fatigue. EDS further breaks down into 13 different types based on genetics and how an individual presents with symptoms.
Why Now?
16 years ago, my daughter was diagnosed with EDS. When I asked the doctor if we should do genetic testing, he said there was no need to, I knew just by shaking your hand that she had gotten it from you. He said the way in which my wrist moved and how soft my skin is, were all the details he needed.
I focused on all I needed to do to make sure my daughter was safe and supported in life, school and dance. I never took the time to get myself officially diagnosed until this year. My physical therapist had suggested that I consider applying for disability. This past year has been the most challenging for me. There are days that I can’t get out of bed because the pain of walking is so bad. There have been weeks where I have a doctors appointment every day. How can I continue to work if typing for long periods of time and writing longer than 5 minutes cause so much pain.
Through the years my orthopedic doctor confirmed I had many characteristics needed to officially diagnose me, but nothing was ever officially done. One day on a trip to the surgery center for back injections, my pain management doctor suggested I meet with a Rheumatologist. He also suggested I fly to Texas and meet with an EDS doctor who also happens to have EDS. That’s not really an option, there has to be someone here in CT. Sadly, I have yet to find a doctor in CT that treats EDS.
Months later, I had my appointment with Dr. Jackson, a rheumatologist in Fairfield, CT. This appointment confirmed I have EDS, likely the hypermobile form. He ordered genetic testing to rule out the vascular form given that I have a slightly enlarged aorta. Additionally, he ordered x-rays of my hands, feet, and back to rule out rheumatoid arthritis. Stay tuned for the results…
My Journey
After a recent follow-up appointment with an orthopedic for hip pain, I decided it was time to start writing. I was referred to him by another doctor in the practice. After multiple x-rays and two MRI’s he turned to me and said, “while there’s a labral tear and tendonitis in your hip, your exam is normal. Your range of motion and strength are great. If the tear was bad enough I would have had to peel you off the ceiling. I’m a sports medicine doctor, there’s nothing more I can do for you.” I explained to him that I am not your typical patient, I am far more flexible than a typical patient and my tolerance for pain is quite high. I walked out of that appointment feeling discouraged and unheard. One the ride home came the idea of starting a blog and writing about how I am not your textbook patient.
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