What is Ehlers-Danlos Syndrome

“Erica was invited to explain to the whole school about a genetic disorder that nearly killed her a few years ago. It is called Ehlers-Danlos Syndrome (EDS). It is a problem with the collagen in the body so it affects every cell in the body. Every system is affected. She lives in constant pain, more than can be imagined, yet she has a bright disposition and hope for the future. Please help with her cause to inform and educate others about EDS. She is hopeful for a cure despite little to no research dollars allocated for this purpose.”

 

Amazing video from a brave, young girl. Well done for explaining so clearly. You’re spreading awareness!

 

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    • MY DISABILITY? My disability usalluy isn’t considered to be a disability at all because it so common. But to what degree is my disability? Good question! I have severe scoliosis. Severe, being the most important, is curviture of the spine that is more than an 45 degree angle. Me? I have two curves (shaped like an S). The top curve is a 45 degree and the bottom is a 67 degree. I’ve lived with this deformaty all of my life, untreated. Now, at the age of 48, I cannot do the every day, normal activities that most people do. I live with CHRONIC PAIN every single day of my life debilitating pain. People don’t understand this because when they look at me they don’t see me with x-ray eyes i wish they could. I can not work a full time job. I can barely get by at home when I have a day off . Since I don’t have a full time job, I don’t have insurance. I am on Medicaid but am unable to get any assistance on SSI because when doctors look at ME they don’t see anything wrong. If they see an x-ray they are suprised, shocked or in disbelief. Because of being on Medicaid, there has never been an MRI done on my entire back .only the bottom 4 vertebre. I guess that’s all they can afford to do. There are surgeries that can attempt to help my condition but no doctors to take it up the tail pipe by accepting Medicaid.Friends and family look at me with furrowed brows when they ask how I am. Like something might have changed or gotten better. Alot of them think I’m lazy or just depressed. I AM DEPRESSED! But not clinically . I’m depressed because I can’t get through one day without excrutiating, debilitating PAIN! I’m sick of pain. I’m sick with pain. I can NOT move WITHOUT pain. IT HURTS TO BREATH! Where is my life going from here? How long can live like this? Will anyone ever really know what I’m going through? Suprisingly enough, that is what’s most important to me.

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    • Fibromyalgia is a syndrome, that means there isn’t one cause or one cure. What may help you might not help me. Ehlers-Danlos Syndrome (EDS) is a gteinec connective tissue disorder. This means that at the gteinec level my collegen (the glue that holds your body together) isn’t made right. Collagen is supposed to have a rubberband effect, while my collagen is more gummy and doesn’t hold my body together like it should.

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,311

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