Ehlers-Danlos Syndrome & Hyper Mobility

nails6, Dec 4, 10:25am
Hi, is there anyone here who has Ehlers-Danlos Syndrome, the Hyper Mobility Type. Do you also have CAH (Congenital Adrenal Hyperplasia) what are your symptoms, how old were you when it was diagnosed, how has it affected your life, do you require morphine type meds to manage pain and does your skin tear easily narrowly missing having to have stitches.My daughter is about to undertake some genetic testing so am eager to know what the journey has been like for others.


sally63, Dec 6, 12:59am
There is an Ehlers Danlos.org board based in the US (I think) that you can get heaps of helpful information from.

luluweezie, Dec 6, 5:21am
Hi, I am 43 andI have Ehlers-Danlos & hypermobility, but not CAH. I think I have Addisons, though, but haven't got around to getting myself tested yet.

Some of the things I've struggled with a bit over the years are mostly connective tissue and fatigue. Overstretched ligaments (easily sprained ankles and wrists, etc), and after having children I've had a history of repeated prolapsed pelvic organs. Also some bleeding issues, which may or may not be connected, I'm not really sure. Heaps of nosebleeds that wouldn't stop easily as a child, and as an adult I tend to continue bleeding after surgeries. Oh, and anemia and low iron stores. Again, that might not be an EDS symptom.

Oh, and gastric troubles -- IBS and gastroparesis. I am now eating a Paleo diet with the help of a nutritionist and many of my symptoms have improved, especially the digestive ones and the fatigue.

Mostly I get hurt easily (bruised and battered, lol), and tired frequently, and my immune system seems to be under stress a lot. I can manage my pain with frequent (daily) panadol and ibuprofen in combination. To be honest, the thing I find hardest about this is that I passed it onto one of my children. I didn't know I had this until recently, and I feel so bad watching him get hurt and feel tired so much!

The skin tearing easily thing seems to be more commonly linked to other kinds of EDS, according to this site: http://www.ncbi.nlm.nih.gov/books/NBK1279/

All the best with your daughter!

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