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09-17-2018 05:47 PM
That's Ehles Danlos Syndrome. My daughter has it and is in constant pain.
09-17-2018 06:06 PM
Prayers for your daughter! EDS is a mysterious disease with many symptoms. I know 1 person who has it, but if you Google it, it only confuses you!
Actually, it is a group of connective tissue diseases and we are full of connective tissues, all over the body!
Difficult to diagnose and difficult to treat each symptom. Best of luck with it.
09-17-2018 07:26 PM
@gloriajean I'm in a private Facebook group called Mixed Connective Tissue Disease. A lot of the people talk about the pain they are in and ways they have of coping. Seems that I've seen EDS mentioned, although I haven't joined in the conversations. My SLE (Lupus) pain doesn't begin to compare until the winter months so I seldom visit the site.
You'll need to be approved before you are able to read anything or comment. Hope someone is able to help you and your daughter. Best wishes.
09-17-2018 07:34 PM
I am so sorry to hear what your DD is going through, and what you are dealing with as her devoted mom. I am saying a prayer that there is someone, somewhere who can help her. Hugs to you both.
09-17-2018 08:08 PM
Thanks for your responses and prayers. She was recently diagnosed, and also that that EDS is a hyper mobility disorder, and she's the Mother of identical twin girls, 2 years old. Her pregancy gave her much more pain that stayed with her. She's going to doctors, PT, wherever they have her go. Her sister, gave her some hemp pills she got from her client that helped her become pain free. It's worth a try, so far she hasn't found relief. I and my husband are there often during the week to help with chores and take care of the twins. Her husband is an electical engineer and works at home and that's a good thing too. She cannot take her girls to the doctor for their check ups, he does. Anyway, I keep my hopes up that someday our prayers will be answered and she can be without pain. By the way, the twins are a joy!!
09-17-2018 08:31 PM
@gloriajean@That is sad to read.I am sorry for your daughter who has to suffer and be unable to enjoy the day to day things with her twin babies.I will pray that you find some cures or treatments for this horrible pain that will allow her to be the happy busy mom that all young mothers deserve to be.
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