Mom who suffers with Ehlers-Danlos Syndrome
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About Mom who suffers with Ehlers-Danlos Syndrome
I have been through every test imaginable to find out what was medically wrong. I have been told they suspected MS among other things. I was just diagnosed with the Ehlers-Danlos on February 4th, just days before my 40th birthday. Then on March 10th my 10 year old daughter was diagnosed as well. They say the life expectancy is between 45-50. I want to get awareness out about this disease because the are 1000's of people being misdiagnosed everyday, due to the fact that a lot of conditions mimick this disease. (Fibromyalgia is one). There are multiple fors of this disease. (hyperflexability, vascular etc.) I along with my daughter have multiple forms. If anyone has this disease and knows more or has any information that is helpful please let me know. Also, I encourage anyone that would like to know more to go to the Ehlers-Danlos Foundation website at www.EDNF. org.
Group Owner: shonna1968 Send a Message
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