Ehlers-Danlos Syndrome (Was: Re: Back Hardware-Lyndi)

[Guest guest]

> M wrote:

> I have Ehlers-Danlos hypermobility syndrome

,

I am SO GRATEFUL that you shared about your EDS. I Googled it, and from what I

read, I think I have it too, and that it runs in my family.

I read that EDS is a collagen-binding gene mutation disorder that runs in

families, which is EXACTLY what everyone in my family who is genetically related

to my mom and her dad have. Both my brother and I have the collagen-binding gene

mutation disorder; so do my mom and both of her sisters; so does my mom's

father.

My mom had one knee replaced because of this disorder, and suffers from chronic

pain because all of her joints are degenerated or degenerating. Both of her

shoulders are all bone-on-bone. Both of her sisters have had at least one knee

replaced because of this condition. My mom has osteoarthritis and rheumatoid

arthritis, and so do both of her sisters and their father (my grandfather). I

personally also have DDD and osteoarthritis. I may have rheumatoid but have

never been diagnosed with it.

My mom has had several herniated discs in her back and neck because of this

condition, and has had surgery for them at least 3 times. My brother has had a

herniated disc in his lumbar spine and had to have surgery because of it. Both

of them still suffer from chronic pain because of their herniated

discs.

I also have easy bruising, and I think my mom does, too. We all have the loose,

saggy skin, and the hypermobile joints, and acid reflux/GERD, and my brother has

severe IBS.

Wow, this is totally amazing!!! Not that we have all these problems, but that I

finally have a name for the condition that runs in my family!!!

, thank you SO MUCH for sharing that you have EDS, and giving the name of

it. I really, REALLY appreciate it!!

e.h.

PS. Here are some links to resources for EDS that I just found when I

Googled it:

" So You Think You Might Have EDS? " By Sue RN with contributions from

Liza Sauls -

http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf

Ehlers-Danlos National Foundation (non-profit) - http://www.ednf.org/

Ehlers-Danlos Hypermobility Type by P. Levy, MD, PhD (National

Institutes of Health National Library of Medicine) -

http://www.ncbi.nlm.nih.gov/books/NBK1279/

EDS (Mayoclinic) -

http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706

EDS (National Institutes of Health National Library of Medicine - EXCELLENT

RESOURCE) - http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome