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  • Ehlers Danlos Syndrome Type lll

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    Old 01-23-2007, 04:44 PM   #1
    Grandma
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    Ehlers Danlos Syndrome Type lll

    My daughter had a difficult birth (VENTOUSE) cord around the neck twice, no amniotic fluid, recently my daughter has been diagnosed with EDS as have my husband and my other three children, my granddaughter has not been tested but shows many signs. Unfortunately Social Services took her into care 2 and a half years ago, and our case is still ongoing, very stressful, but she was found to have healing fractures at 11 weeks old. We know she has a medical problem but we are in this nightmare procedure of despair and disbelief a long long story. My question is lack of fetal movement for at least 6 to possibly 8 weeks, could make the baby's muscle tone, bone etc very week, so that the 'clicky hip test' that she had 4 times, I believe caused the fractures, can anyone throw any more light on this subject

     
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    Old 01-24-2007, 06:43 AM   #2
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    Re: Ehlers Danlos Syndrome Type lll

    I have EDS type III with a suspected cross of type I. As you know EDS is a genetic collagen disorder and there are many types. Because our bodies are made primarily of collagen it affects nearly all of our organs, skin and tissue. The most common feature of EDS is the constant dislocations or sublexations. Most people who say they are "double jointed" in fact do have EDS.

    Type III is not fatal, however type II and I are. Type III's main characteristics are soft velvety skin, loose skin, easily bruised and frequent dislocations or sublexations.

    Your story is not uncommon. I belong to the National Foundation in the US and have heard many stories of children being removed from their parents home because of injuries caused by EDS here in the US so I don't doubt it doesn't happen in the UK or elsewhere.

    One woman was put in prison who lives in Michigan several years back because her son died when his colon erupted. It wasn't until they did an autopsy that they found he in fact had EDS. All charges were dropped.

    It is not common however that bones break when you have EDS but it can happen. Individuals who's bones break often generally have Brittle Bone Syndrome. Has she too been tested for this in addition to the EDS?

    Did she have a skin biopsy done to test for EDS? Type III is undetectable via testing, it only though a series of ruling out other conditions and current symptoms that one is diagnosed. This is why I ask you about Brittle Bone Syndrome as opposed to EDS. How did the doctors actually determine she does in fact have EDS?

    I also have met an individual who was in your shoes, her daughter was taken from their home when she broke some bones several times. It was believed she had EDS so the mother had joined several support groups for EDS for support and advice. It turned out that her child did not in fact have EDS she had Brittle Bone Syndrome.

    I suggest you contact the National Headquarters in your Country. If you were in the US I could easily assist you in finding the support you need. Unfortunately I noticed you are from the UK.
    The Foundations are often aware of lawyers who help in this situation because it does arise all too often because doctors are very uneducated when it comes to EDS. In fact, I was not diagnosed until I was 30 and I've been to the best of the hospitals in the states that there are.

    They would be a good starting point in regards to your legal issues with the child and what you can possibly do. The obvious is proper testing first if not done and then finding a lawyer who is familiar with EDS that can go to bat for you as well as finding a qualified geneticist or physician who specializes in the treatment of EDS who is also willing to go to court or write letters. I also again suggest she get checked for brittle bone syndrome. The "clicky hip test" means nothing, there are many syndromes which involve loose joints and you'll want to have the appropriate diagnosis to prove you are not an abuse parent.

    If she has not had the formal skin biopsy test for EDS I suggest you push for it. If they refuse then I suggest your husband be tested as well as any family member who you may suspect has EDS. If they prove to have EDS then there's a 50% chance your daughter does.

    Unfortunately if it is type 3 it isn't going to appear positive on any test the biopsy only gives positive for all other types. As mentioned before it is diagnosed by the actual symptoms and ruling out things like Sjorens Syndrome, or in your case, Brittle Bone Syndrome.

    I wish I could be of more help. if you have any more questions do not hesitate to post back. I'll do all I can to assist you in trying to find the help you seek. Best of luck

    Barbie
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    Old 01-24-2007, 07:50 PM   #3
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    Re: Ehlers Danlos Syndrome Type lll

    I believe EDS is being shown right now on Primetime's Medical Mysteries.

     
    Old 09-25-2007, 11:49 AM   #4
    malaurie
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    Re: Ehlers Danlos Syndrome Type lll

    Dear Grandma-my son has suspected ehlers danlos-thankfully we have ruled out the vascular type. However, he has had several broken bones, 2 in each forearm and a broken leg just below the growth plate. We thought he had OI but the genetic and bone tests are non conclusive. I can see how a dr not familiar with the disorder could have accused us. One emergency dr who is well respected by us actually prepared us to be questioned at the larger hospital he was sending us to, but thankfully, enough is obvious about my sons condition that it was not an issue. I would definitely start gathering professional opinions from the ehlers danlos foundation-they could also point you in the right direction as far as where to get practical help-the earlier it is diagnosed, the more your grandson will be able to avoid the pitfalls of eds. It sounds like since y'all have so much eds in your family, the baby is MUCH better off with you, because you are being educated in this. Blessings, Laurie

     
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