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Ehlers-Danlos Syndrome? |
I have just been diagnosed with ehlers-danlos syndrome, but they did not really explain it to me that much. It's the one that affects the joints. I am wondering how it affects daily life, anyway to treat it, and why should I get the genetic tests done? Well, it generally depends on the type you have. I have Ehlers-Danlos Syndrome Hypermobility Type. With me, I am in almost constant pain. How old are you? I'm almost seventeen. Hmm, well it's affects on daily life is mostly with pain. Anyone who doesnt have EDS cant really understand that part of it. On any given day, things can hurt intensely, or you can dislocate any joint. I would suggest getting braces to wear on joints when they dislocate, as they hold them in place well. I have bad times sometimes, periods where I can't walk at all for about 3 weeks at a time. I have a wheelchair for this. Mostly for treatment, you discover what works. If you dont bruise too easily (i do!) then you might want to have deep tissue massages if your back hurts. I do physical therapy, but i would suggest looking for hydrotherapy,where you swim in a heated pool and do weightless exercises. It feels amazing! I'm on different medications for this too, like amitriptilyn. It actually works somewhat well, but the best way to control any type of pain is 800mg of motrin, trust me. It has anti-inflammatory drugs that can relieve joint pain. I'm not especially sure about the genetic testing,but I've had it done too. It's mostly to assess the risk of passing it on to any children you'll have. Also, if you're looking for anyone to talk to, I would suggest joining EDNF.org, where you meet other people who have this disease. It is basicall y a condition which is apparently auto immune in nature. It is a defect of collagen synthesis. It is usually seen in families. |
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Read The Trigger Point Therapy Workbook by Davies. Get a chiropractor and a massage that will read it as well. It keeps me from screaming ...They usually don't call it 'Type 2' anymore....they call it Classical. For some reason, they decided to lump 1 and 2 together. I guess they're the same thing...? Anyway..... Ehlers-Danlos syndromes are a group of genetic disorders that usually affect collagen, which is a protein that acts somewhat like a glue and keeps our tissues together. Types I and II are now term... I dont know if I can help you, but my mom and I both have EDS hypermobility type. It's not a big problem for me now but I understand it will get worse. My mom and I have run into the same prob... What is EDS? Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unsta... I was diagnosed with ehlers-danlos in 1993, I was 10 years old (23 now). I have also been diagnosed with hyper-mobility. I already have osteoarthritis in my left knee and all my joints pop out. I t... Benign Hypermobility Syndrome is one of the names of Hypermobility Syndrome. Other names are double jointed or loose joints or hyperlaxivity. It is called benign in difference to the malign types... In the US, there's 1 case of EDS for every 5,000-10,000 people, according to the Ehlers-Danlos Foundation. Other sources say 1 in 400,000. Unfortunately, sometimes patient foundation tend to... |
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