Ehlers-Danlos Blog Helps French-speaking EDSers

Check out this new EDS Blog in French.

Danshowbiz“20 years to get an hypermobility diagnosis, 24 years to become disabled, 30 years to get the Ehlers-Danlos Syndrome diagnosis… A road full of more or less obvious signs, neglected until I took my health into my own hands. For the last 10 years, a life of disability and facing the lack of understanding of people not knowing EDS. That is why I started my blog (in french)  my zebra life , to raise awareness as to what it is! I was born in 1979. At first glance, in good shape. Nothing special. A thoroughly healthy baby! I never crawled like other toddlers. No, I was doing the full frontal split and tugged myself like that. My little baby booties were not torn on the toes, like the others, but on the heels! First sign of hypermobility. Buy hey, frankly… no one saw there anything else than something funny! A sign that I’d be a ballerina! From when I was a toddler to my teenage years, I would catch everything. Ear infection, laryngitis, pharyngitis, flu, stomach-bug, unidentified “virus” (did you know there are dozens of viruses? That without a blood test or throat culture, doctors can’t tell you which? That it costs a lot to do those tests and, since there is nothing to do anyways, it’s worthless?… so, I had “a virus”). One year, I had 2 bronchitis in 6 months. In high school, I had the nice nickname of “cat frame” (sorry it’s a Quebec slang thing “frame de chat”… I really can’t translate it fully… I wasn’t sturdy, that’s what it comes down to!) or of “the revenant”, as in “ghost/stranger” since I was so often absent. In my second year of high school, I was more often absent than present, without exaggeration. It was awful to get in the bus or arrive in class and be asked, with contempt, “So, what was the problem THIS TIME?”. And then those arguments “so?, I had that too, once, and I didn’t miss school!”. It was enough, sometimes, to have me miss a few more days, to come back on a Monday instead, because then it would be less noticeable, it was like starting anew and I’d get less bugging. I remember, in my 3rd year (elementary), that the school director gave drove me home… I was too sick to stay in class and my mom didn’t have a car… instead of putting me in a taxi he gave me a lift! Gosh was I intimidated! Around the age of 11 I started to have migraines, too. It’s also around that time that I started having severe myopia, which never stopped getting worse (until I hit 30 years old). And in high school I developed a slight double vision problem… from optometrist to ophthalmologist, we never could find the source of the problem, and I was told I would just have to learn “seeing double”. On top of that, I’d get hurt often. Running behind the house with my friends, from a young age, I would “turn” an ankle, invariably. Not really spraining, but it would hurt, sometimes swell a bit… but it wouldn’t last. I would sprain a finger at least once a year, each time we played volley-ball in physical education class… and sometimes otherwise, also. Falling, playing… That’s how I learned to write holding my pencil with other fingers (instead of the classic middle-index-thumb position) and with the left hand. Because, of course, you don’t miss class and are not excused from writing just because you have a sprained finger! I can now write clearly, although less elegantly and pretty slowly, with my left hand. Umm… yay? My mom remembers (I don’t), that in elementary school, I dislocated a shoulder, after a bad fall tobogganing one winter. After emergency room visit and X-rays, of course everything was “normal”. My shoulder replaced itself. Mom says my collarbone was always weird on that side after that, though. I had a record number of X-rays… I would get hurt a lot… but they always would come back normal… because I’d never break anything! I also often had knee pain. For about 10 years, my family doctor said I only had growing pains! Sure… I never stopped growing for all those years… especially with those pains normally happening rarely, and not in the knees! And then I grew a bit older… at the end of high school I tore a ligament in my right knee. I spent almost one year using crutches and then a cane. I needed a surgery to remove a piece of cartilage which was preventing me to move my knee, and a piece of meniscus was also removed. It’s at that time that I started to get a subscription to specialists offices… I would see orthopedists, physiotherapists, rheumatologists… who, back then, tried to understand why my knees hurt so much. At first, they’d tell me “it was not possible” that both my knees hurt, since only the right one was injured… or that “I shouldn’t hurt anymore” since the surgery was a success… Or better yet, that “I should get used to live with the pain” since a torn ligament never really ever healed… Contradictory… and so very useful, don’t you think?! I was very thankful… (NOT). 2 years later, it was a sprained ankle, and I tore 3 ligaments. And it’s there that I had the first hint of an answer. We were in 2000. I was in college and I was dragging myself in crutches… I saw a new physiotherapist to help me treat the sprain… and in testing the left ankle’s flexibility, to check how bad the right one was… she exclaimed : “But you are hypermobile!” and started testing (just like that, by eye) a few other joints… she was the one to tell me I was hypermobile in all my joints. She told me that was the reason I was getting so easily injured, and that I should never wear high heels (I had already understood that), that, ideally, I should only wear running shoes and boots that support the ankles… I couldn’t believe it… I was 20 years old, had suffered from that problem since birth, I’d had problems and had went from specialist to specialist for years… and it took a “simple” physiotherapist, which specialists look at with some contempt, to diagnose me?! I was so happy to understand! But a bit disappointed that there was no solution, except prevention. That year, the rheumatologist I was seeing told me that my pain, which at that time had started to extend to my ankles, wrists and sometimes more, was explained by arthrosis. Which is joints wear and tear. He told me if I wasn’t careful, if I didn’t stop dancing, I would end up in a wheelchair before I was 30 years old. I stopped seeing him soon after… but not because of that, simply because he couldn’t help me, had done all he could and his office was far from where I lived. I then finally saw a rehabilitation physician specialized in sports medicine. At first he tried really hard to find the source of my problems, without really understanding. But he would continue to look for an answer and try to help me. I still see him to this day, in fact. 10 years later, he never let me down. He confirmed that I was “hyperlax” (he prefers this term to “hypermobile”), but for him this didn’t explain my pains. At first, he didn’t accept the arthrosis diagnosis. The rheumatologist didn’t put that in his report… even with such a prediction as the one he gave me! So the rehabilitation physician had told me “What, do you want that bad to be so sick? To have that diagnosis?” He didn’t understand… Eventually, he himself is the one who found out I didn’t have any cartilage left in my knees, that my knees were the ones of a 75 years old… He now agrees with the arthrosis diagnosis… I wished it wasn’t the case… or should I say, that I didn’t have it! In 2003, I fell very ill. After a combo pharyngitis-laryngitis I didn’t get better. In fact I got worse. We didn’t know it, but it was my EDS getting more complicated. It was orthostatic hypotension that started. It looked like mononucleosis… except the tests were normal, and it didn’t go away. I wasn’t able to function, to work. I lost my job, I lost my apartment, I had to go back to live with my parents. I eventually got that diagnosis, which was wrong, of Chronic Fatigue Syndrome. Prognosis? Nothing to do. But I was unable to accept that, and most of all, it didn’t make sense to me. Because I knew I already had the hypermobility… and with my biology knowledge, I felt that all my symptoms, or almost, could be explained with low blood pressure… I did more research, I argued (we are talking years, still… because when you get turned down, you end up on the ground… it’s long to get back up and start over… plus, getting appointments in our medical system takes forever!). Finally, from an hypermobility information forum to a dysautonomia symptoms research, I made the connection… and realized that not only did I probably suffer from a blood pressure problem and not CFS… but that EVERYTHING was probably linked! I spoke to my family doctor, which after checking on the web was convinced enough to sent me to see a geneticist. It’s in 2009 that I got the Ehlers-Danlos-hypermobility syndrome diagnosis, and it’s the geneticist who suggested I go see an internist, because she thought possible that the rest of my symptoms were related… at the very least, she was also convinced that I did not suffer from Chronic Fatigue Syndrome… 3 months later, I was seeing an internist and was getting the EDS caused orthostatic hypotension diagnosis and, finally, a treatment… which was not giving me back my health, but helped a lot. Enough so that I didn’t need my wheelchair anymore, with a few exceptions. Meanwhile, though, my joints continued to deteriorate. If I only look at the joints evolution: 10 years old : I get injured more easily than my friends, but it doesn’t last, and it’s rarely severe. I have knee pain, especially in the summer when I don’t dance. I’m very active (dancing, playing with friends, etc.) 20 y.o. : I get injured, I tear ligaments. I’m very active, never have a minute to myself, but am not as active physically. Following my rheumatologist advice, I almost stopped dancing (it hurts me a lot anyways!). 30 y.o. : I get injured doing the silliest thing, I’m bedridden weeks at a time, I have a wheelchair, I have awful arthrosis episodes… 40 y.o. : ???? Very disheartening. 🙁 But I tell myself that research is only really done since the past 15 years, so maybe a miracle is possible in the next 15 years! I just did genetic tests for the classical EDS and should have the results shortly. In the meantime, I decided to start a blog  my zebra life , to share my experience and information about Ehlers-Danlos Syndrome, hoping to help people like me, and mostly to help people around us understand. There are so few EDS resources, and even less in french… I’m very proud to be able to do this small gesture for the EDS community.”

Written by danshowbiz,

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