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Thread: Hello friends!

  1. #1
    First-graft Pearl Senior Guide Member mausketeer's Avatar
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    Red face Hello friends!

    Hi everyone, long time no see! Thought I'd come on and say hello as it's been so long (saw some pearls I liked on Etsy, made me think of ya'all! Lol).

    Long story short, went to Costa Rica last February and....... broke my LEFT wrist! (some of you will remember the saga of my right elbow? My wrist fracture was also really bad, broke both long bones, but no surgery, which I'm not sure was a good idea in hindsight). Then last summer was diagnosed (FINALLY!) with a rather rare genetic disorder, Ehlers-Danlos syndrome (If anyone on here watches "Coronation Street", it's what Izzy has. She has the same type as I do, type 4). It pretty much explains everything, including why I have fractured five bones in the past eight years (have osteoporosis, it's part of the condition).

    So...... this last year has been, well, not great. Lol. But, I'm hanging in...... and trying to spread the word about EDS! The more people who know about it, the better (doctors missed it over and over and over.......)

    Jodie
    "I believe the nicest and sweetest days are not those on which anything very splendid or wonderful or exciting happens but just those that bring simple little pleasures, following one another softly, like pearls slipping off a string."
    - Lucy Maude Montgomery -

  2. #2
    Pearl Enthusiast Senior Pearl-Guide.com Pearl Expert Pearl Dreams's Avatar
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    My word! You have had an unpleasant time of it.

    This is the first I've heard of Ehlers-Danlos syndrome-- thank you for sharing the information with us. I hope there is some way to reduce your risk of fractures, going forward?

  3. #3
    Pearl Maven Senior Pearl-Guide.com Pearl Expert Caitlin's Avatar
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    I am happy to hear from you and sad to hear your news. I was always puzzled by your broken bones, even roller derby falls hardly ever break bones- I have a niece who does rd and I can't believe the falls they take.... I knew something was wrong and I'm glad to know what.

    Thanks for letting us know about yourself, and EDS, and please post as much as you can. We missed you.
    Caitlin

    How to hand-knot pearls without a tool

    My avatar is a Sea of Cortez mabe pearl. One of a pair of Mexican handmade earrings.

  4. #4
    Pearl Scholar Senior Pearl-Guide.com Pearl Expert pattye's Avatar
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    Jodie,

    You've been missed! Glad you popped by to say hi; EDS is new to me also. Hopefully there are treatments to help you stay healthy and unbroken!
    Pattye


    PatriciaSaabDesigns.etsy.com

    facebook.com/PatriciaSaabDesigns

    SO MANY PEARLS, SO LITTLE TIME----

  5. #5
    First-graft Pearl Senior Guide Member mausketeer's Avatar
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    Thanks everyone! Good to see you too! Yes, looking back on things I'm trying not to be angry about the doctor's missing it (I remember specifically asking my surgeon if perhaps I had osteoporosis and his reply was "oh, you're too young for that". People with Ehlers-Danlos can have it in their 20's!

    The really interesting thing about EDS is that they're not really sure how rare it is. They used to think it was one in 20,000 people, now they think it may be more like one in 5,000 (that's the same as MS, yet nobody has ever heard of EDS). It seems to be very underdiagnosed, but it is so OBVIOUS who has it! Basically it is a defect in the genes that control collagen production. Our collagen is faulty as a result. Since collagen is in every part of the body (skin, bones, muscles, tendons, blood vessels etc) it affects everything. The most obvious indicator is being double jointed. When I was a kid, it wasn't a problem, now that it's really hit, my joints pop out a lot (loose tendons), this causes pain, damage to the other structures, more pain, etc. They even theorize that EDS might be the actual cause of fibromyalgia.

    Anyways, February 28th is International Rare Disease Awareness day so....... spread the word on EDS! Ask me any questions about it (I've been reading a LOT. I know more than most of the medical people I see. It's kind of sad.....)

    Jodie
    "I believe the nicest and sweetest days are not those on which anything very splendid or wonderful or exciting happens but just those that bring simple little pleasures, following one another softly, like pearls slipping off a string."
    - Lucy Maude Montgomery -

  6. #6
    Natural Pearl Senior Pearl-Guide.com Pearl Expert KarinK's Avatar
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    Hi!

    Been thinking about you! I'm sorry to hear you've gone undiagnosed for so long but glad they figured it out. No more skatebording or roller skating, I guess...

    How did you manage to finally get the right diagnosis?

    - Karin

  7. #7
    purveyor of pearls Senior Pearl-Guide.com Pearl Expert pearlescence's Avatar
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    Are you now planning to go to work in a knicker factory in Salford?

  8. #8
    Second-graft Pearl Senior Guide Member Happy Huku's Avatar
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    So sorry to hear you have been in the fracture wars all these years but pleased you have a diagnosis and can hopefully move forward. Am off to surf the web and find out a bit more about EDS. Awareness is so important.
    Hopefully a little dose of pearlitis will help the morale!
    Happy Huku
    Queensland
    Australia

  9. #9
    Natural Pearl Senior Pearl-Guide.com Pearl Expert Amrita's Avatar
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    Welcome back Jodie! I am sure that armed with the knowledge about EDS, you will be able to stay healthy and without any more fractures. Best wishes from Beijing!

  10. #10
    First-graft Pearl Senior Guide Member mausketeer's Avatar
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    Thanks for the warm wishes everyone! It was almost a fluke that I was diagnosed Karin. I had a long wait to see a physiatrist (they work with people following amputations etc. I think they are basically the Phd version of a physio-therapist) to see why my shoulders kept subluxing (partially dislocating. My boyfriend can pop them back in now usually. Hurts a LOT). He listened to my issues and pronounced the verdict within ten minutes (as I said, once you know about EDS, it's fairly obvious). He said I would be shocked once I started reading about it, as it is so "ME". He was right.

    There are so many odd little clues that all add up: being double jointed is the major one as I said; having stretchy and/or very soft velvety skin; scarring easily; asthma, allergies and "tummy issues"; having had your wisdome teeth removed (our teeth are usually very crowded); having had your appendix or gallbladder removed; having eyesight that changes often (new glasses every year); bunions (our muscles can't hold the foot in shape, it becomes deformed just from regular pressure of walking on them!); leg cramps; even our face shape and features! (Tiny nose, small mouth, corners of eye droop down). It's really quite fascinating......

    And I can't believe Izzy can SEW! Lol. My hands and fingers hurt so much. She's a trooper! Oh yeah, ACTING! Lol
    "I believe the nicest and sweetest days are not those on which anything very splendid or wonderful or exciting happens but just those that bring simple little pleasures, following one another softly, like pearls slipping off a string."
    - Lucy Maude Montgomery -

  11. #11
    Museum Pearl Senior Pearl-Guide.com Pearl Expert
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    I am sorry to hear about your diagnosis, I too had never heard of this before and it appears to be relatively common if they are right about the 1 in 5,000 . I'm guessing that , like you, a lot of people do not get diagnosed correctly for a long time, if ever.

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