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Old 12-11-2016, 10:05 PM   #1
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Ehlers - Danlos Syndrome

My 1 year old daughter was recently diagnosed with this genetic disorder... I was just wondering if there is anyone else with any experience with this. We are going back to Children's Hospital tommorow for some more testing...

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Old 12-11-2016, 10:19 PM   #2
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Re: Ehlers - Danlos Syndrome

Never heard of it but

I hope the testing comes back well.
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Old 12-12-2016, 07:24 AM   #3
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Re: Ehlers - Danlos Syndrome

I'm sorry. I asked DH about it last night and he knew only what he learned in school but hadn't met anyone with it. I hope your day today is informative and helpful - prayers and hugs for you today!
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Old 12-12-2016, 07:46 AM   #4
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Re: Ehlers - Danlos Syndrome

Hugs keep us updated on the testing.


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Old 12-12-2016, 08:46 AM   #5
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Re: Ehlers - Danlos Syndrome

My friend has EDS, would you like her contact info?
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Old 12-12-2016, 08:48 AM   #6
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Re: Ehlers - Danlos Syndrome

A friend of mine has a daughter with it. Her daughter is now 16, but they just got a diagnosis this past year.
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Old 12-12-2016, 09:48 AM   #7
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Re: Ehlers - Danlos Syndrome

I hope you find answers. Is that Boston's Children? I was very pleased when I went there.
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Old 01-15-2017, 12:28 PM   #8
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Re: Ehlers - Danlos Syndrome

I have a friend with it as well. She leads a pretty normal (very successful) life. It effects her coordination and she had to be mindful of it. It didn't bother her much when she was younger as I understand but now that she is nearly 40 she has to keep up with her exercises. She's had surgery as well for her hips.
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Old 03-26-2017, 10:40 AM   #9
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Re: Ehlers - Danlos Syndrome

I know a woman with this disorder. She was a gymnast when she was young. They always wondered why she was so flexible, beyond the norm. Eventually, as she got older pain started to affect all of her joints and they were dislocating all the time. She had many surgeries to shorten her ligaments, and repair joint damage, etc. Mostly her hips and shoulders were affected. But, also it causes her spinal issues because her pelvis was so limber.

She went to Boston Children's Hospital for her surgeries. There are varying degrees of this disorder and what it can affect.

Wishing you all the best for your child.
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Old 03-27-2017, 08:27 AM   #10
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Re: Ehlers - Danlos Syndrome

How did your visit to the hospital go?
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