Ehlers-Danlos Syndrome and the National Foundation

Ehlers-Danlos Syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders. It is a progressively debilitating syndrome that can cause loose unstable joints which dislocate easily, skin fragility (tears and bruises easily), and/or organ fragility (major organs, veins and arteries can spontaneously rupture). EDS affects about 1 in every 5000 people; however it is grossly under- and/or mis-diagnosed: some 80% of people with EDS do not receive a proper diagnosis or treatment within their lifetime. We are working to change this statistic by raising awareness of this disorder within the medical community and in society at large. The EDNF is a 501(c)(3) nonprofit organization. www.ednf.org

[Always check with your doctor - my posts should be considered my informed personal opinion which does not necessarily reflect the official position of the EDNF or any other organization or person concerned with Ehlers-Danlos Syndrome.]

Category:

People & Blogs

Tags:

• EDS
• ehlers
• danlos
• EDNF
• yomags
• collagen
• double-jointed
• hypermobile
• double
• jointed
• hypermobility
• fibromyalgia
• CFS

[datzfast]

i remember the fist time i didn't feel pain

it was after a shot of morphine before knee

surgery. the surgeon didn't know what to think of the cartilage. he sent it to be tested for cancer. I'm 52 , crippled but i have hope. thanks you tube. everything fits

now. you see i didn't know what was wrong until i started researching.

[rogneid]

Hugs to you, YoMags! It's nice see this. Technology makes me feel not so alone anymore! I have EDS-hypermobility type, or as my PT calls it Gumby Syndrome. Getting the word out about the kooky and painful group of conditions is great!

[flipflopjulie]

Hi Mags!! It's Julie from the EDNF group. (Sama's partner). It's great to see you on Youtube, and see that you are advocating as well! You're great, and hope to see ya soon.

[Canichenoir]

I hear you. I have this and it totally turns your world upsidedown. It makes school difficult and it can be very painful. Thanks for support!