EDS was my “aha! moment”

Posted January 2, 2020

I am 61 years old, and a little less than two years ago I was diagnosed with hypermobile EDS (hEDS.) I am grateful for all the research on EDS, the informative resources available on The Ehlers Danlos Society’s website, and the prompt answers to all of my questions. It’s tremendous to not feel alone.

I would like to provide hope and comfort to the young adolescents and adults who have this genetic connective tissue disorder. So, to them, I say: understand your body, advocate for yourself and follow your passions.

Before I start sharing a rather typical health history, I wish to say that I have led a very active personal and professional life, followed my passions (teaching, piano and nature), and raised two children (one with hEDS). I have faced life challenges as any mature adult would have. Determined to enjoy life with hEDS, I wish I knew how this connective tissue disorder is going to affect my aging process: will I become unhooked internally, looking like a floppy bag? Humor helps, there is no divine glass ball in front of me.

Two years ago, after another extensive foot surgery, my podiatry surgeon suggested that I be tested for EDS, an unknown acronym to me. Fortunately, I discovered the Society’s website and I had a “aha! moment.” A few months later, the hEDS diagnosis was confirmed by Dr. Abbott, head geneticist at Bay State Hospital, Mass.

The hEDS diagnosis changed my life in many respects. It gave me some emotional relief and the unparalleled understanding of the causes of a life plagued with health issues. Additionally, whereas until then doctors had never seemed to find the cause of my ailments, suddenly the word EDS seemed to add meaning to my medical chart. I always bring my medical history and a long list of all the side effects of medications to the attention of any medical provider.

Throughout my life I always thought that everybody had the hypermobility that I had, and I never gave a second thought to why I could so easily contort my joints, until I learned about the Beighton scale. Needless to say, I have had multiple falls, sprains, a dislocated knee, unexplained joint pains and gastro intestinal problems, I bruise easily to name a few. My skin is very sensitive, quite transparent (small children love to watch the veins in my hands), very soft and distended, but it heals well. I have sprained my ankles while standing, immobile. Every step is a conscious motion.

One of my earliest memory is that of wrapping my wrists and ankles in bandages for support. I often complained of body aches, I had digestive issues, I was a very picky eater. I found relief with a warm bottle on my tummy; to this day I love my warm cherry pits bag that I can heat in the microwave; I suffered from many upper respiratory illnesses and ear infections. I was told to stop making my jaws crack when I ate.

In my thirties I was diagnosed with chronic inflammation (skin and internal.) I have had a number of organ prolapses (mitral valve, uterus, bladder), and periodontal disease. I am hearing impaired and use micro-chipped hearing aids. My metabolism does not process conventional medications and I have many adverse reactions and allergies. My lymphatic system is very sensitive so hives have often been an issue.

Eight years ago, after months of constant hives, I started to consult with a nutritionist-herbalist who treats me with plants; she has been the only person who has used a wholistic approach in relieving some of the inflammation that have afflicted me. However in medical emergencies I must take conventional medication. An organic anti-inflammatory healthy diet has been essential: no meats, no dairy, no processed foods and refined sugar, no alcohol, no yeast and no wheat (too many pesticides.)

When well, I remain active physically, using common sense. I know my limits. Lately, I have had to avoid certain activities but I can walk, bike on paved trails, canoe and garden. I wear a Richie brace and orthotics. I wrap my ankles at night. I keep a good posture as best as possible, yet I can never walk straight. Being a pianist since the age of three has strengthened my upper body. I have had elbow tendonitis, but that’s common among musicians. I relieve it with icing and rest.

Perhaps there is a correlation between my hEDS and my learning disability (dyscalculia.). I also have synesthesia and, until I read about it, I thought that everybody was like me, never realizing that I was the only one computing using a color spectrum, and feeling emotions instead of conceptualizing numbers. Stay strong!

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