Hidden in plain sight: my journey with clEDS

Posted March 4, 2019

by Lori H.

EDS: Ehlers-Danlos syndromes. 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 conditions. 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 own 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. After many weeks and great thought, I began to realize 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 (I could pop my thumbs out, bend all fingertips inward and outward, touch thumbs to forearm, and touch floor flat handed while standing), had thin wrinkly skin on my hands and face and often called “gaunt”, and had abnormal menses that continued until my hysterectomy when I was 46.

In my adult life, I experienced difficulties with all 3 of my pregnancies. My 1st pregnancy left me with a complete abdominal wall hernia, excessive stretch marks, and dropping abdominal skin. My 2nd pregnancy ended in an emergency c-section. I was induced with my 3rd son, and the delivery didn’t progress till the following day. The multiple epidurals I was given did not work, 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. I have also experienced abnormal tears in knee cartilage, 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 until 5 days post-op, 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 activities, 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, cervical spondylosis, 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 throughout my abdomen and worm-like sensations in my legs. A few years ago, I experienced a trauma 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 well, 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 came on for her. After saying, for years, “it’s just you, don’t worry” she said, “OMG, it is YOU!” She agreed to refer me to the rheumatologist that had been suggested by my neighbor and I got right in. After a thorough exam, she was confident I too had EDS and put in a requisition to an EDS Clinic. Within 7 months I had my initial consultation and was given my classic-like EDS 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 soul’s passion in this life is to help and heal others. I share my days with special needs students at a regional school board and with precious animals at a local Veterinary clinic, as well as with my own rescued creatures. I have my Level 2 Reiki Attunement, am an Animal Reiki Practitioner and a Certified Reflexologist. Due to the deteriorating condition of my hands, though, I am unable to continue with the latter and not sure how long I will be able to continue working as an EA. I would love to find another beneficial healing art to add to my toolkit to help assist those in need, especially those of us with EDS.

My days are filled with constant pain and spontaneously 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, for which I have been prescribed a brace that I now need to wear on a daily basis. I also wear an ankle stabilizer in order to get around safely. Every step I take brings fear that another injury will occur. My shoulders dislocate on a nightly basis and a good night’s sleep is nonexistent, and filled with flashes of light from the posterior vitreous detachment in both eyes. When others comment on the beauty of a clear blue sky or a snow-covered vista, my vision of it is marred with streamers and floaters that I can’t clear.

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


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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