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Esteemed Contributor
Posts: 5,175
Registered: ‎03-10-2010

Does anyone know anything about EDS?

That's Ehles Danlos Syndrome.  My daughter has it and is in constant pain.

 

Esteemed Contributor
Posts: 7,169
Registered: ‎11-15-2011

Re: Does anyone know anything about EDS?

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.

Esteemed Contributor
Posts: 7,322
Registered: ‎02-22-2015

Re: Does anyone know anything about EDS?

@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. 

Money screams; wealth whispers.
Esteemed Contributor
Posts: 6,504
Registered: ‎05-22-2014

Re: Does anyone know anything about EDS?

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.

Esteemed Contributor
Posts: 5,175
Registered: ‎03-10-2010

Re: Does anyone know anything about EDS?

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!!

Honored Contributor
Posts: 14,917
Registered: ‎03-09-2010

Re: Does anyone know anything about EDS?

@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.