I have clEDS, but I will not let it have me!

Posted July 15, 2019

EDS…Ehlers-Danlos syndrome…until a casual conversation in 2016, on the sidewalk in front of my home with my back-yard neighbor, I had never heard of the acronym or the condition.

I had recently suffered full ATFL and AITFL ligament tears in my right ankle, from a typical walk from the mall to my car. Being in a walking cast, my neighbor began questioning what happened and started sharing her EDS story with me. At the time, I had no idea what she was even talking about, and actually thought “Oh no, that’s not me! Nothing for me to worry about.” She gave me the name of the rheumatologist that was instrumental in her diagnosis, and suggested that I should investigate my situation, past and present, which, after many weeks and great thought, began my journey to realizing that I too might be living with this rare genetic disease.

My childhood was filled with daily falls, stubbed toes, scraped knees and many band-aids, more so than usual for my classmates. I encountered weird “accidents” that caused unusual bleeding and no one thought anything odd of it. I had droopy eyelids, was double jointed (ie. pop thumbs out, bend all fingertips inward and outward, touch thumbs to forearm and touch floor flat handed while standing), had thin wrinkly skin on hands and face and often called “gaunt” and had abnormal menses, that continued until a hysterectomy was preformed when I was 46.

In my adult life I experienced difficulties with all three of my pregnancies. My first pregnancy left me with a complete abdominal wall hernia and excessive stretch marks and dropping abdominal skin. My second pregnancy ended in an emergency c-section. I was induced with my third son, and the delivery didn’t progress till the following day. The multiple epidurals I was given did not take, and by the time I was finally in recovery, it took extended time for them to wear off. I continue to experience pain at the site to this day. As well, I have experienced abnormal tears in knee cartilage and chronic elbow tendonitis, repeated bladder prolapse and a vaginal prolapse that lead to my hysterectomy. Unfortunately, with this procedure, I suffered a suture burst, which wasn’t discovered till 5 days after, a total system crash, and 2 blood transfusions. But still, in the eyes of my family physicians, “nothing” was wrong.

In 2010 my body began to deteriorate rapidly. I had, what I would call, an internal “eruption”. I lost my voice for 6+months, developed facial paralysis, experienced abnormal retinal activites and had a malfunction of ear nerves. I was told by my ENT to take a vacation. As pain began to become more persistent throughout my body, it was discovered that I had thoracic compression fractures, scoliosis and degenerative disc and facet disease, a broken thumb and repeated sternum/shoulder/collar bone injuries, all for no apparent reason. As time went on I began experiencing buzzing sensations thru my abdomen and worm-like sensations in my legs. A few years ago I experienced a trama that injured my tailbone, followed by a leg injury and then the ankle ligament rupture that I mentioned earlier. Surgery was performed to repair my ankle, but not without problems. I did not handle the anesthetic, as usual, but more importantly, the incision did not heal… a red flag!

I began to research the EDS that my neighbor spoke of. Could it be? I spoke with my family physician and a light went on for her. After saying, for years, “It’s just you, don’t worry” she said “OMG, it’s YOU!” She agreed to refer me to the rheumatologist that had been suggested and I got right in. After a thorough exam she was confident I too had EDS and put in a requisition to the EDS Clinic at Toronto General. Within 7 months I had my initial consultation and was given my classical-like (clEDS) diagnosis. I was grateful to have a medical team to help me make the connection and help me navigate the excursion I have been “blessed” with.

My days are filled with constant pain and spontaneous broken blood vessels throughout my body. I am constantly in fatigue mode and brain fog is the norm. My balance is off and I have fallen down the stairs multiple times over the past few months, leading to retrolisthesis in my lumbar region of which I have been prescribed a brace that I need to wear on a daily basis now. As well I wear an ankle stabilizer in order to get around. My shoulders mis-locate on a nightly basis and a good night’s sleep is nonexistent…

I have clEDS, but I will not let it “have” me! I live with gratitude and face each day with optimism. I am that I am…

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