I finally have a diagnosis for what is wrong with me. We are getting genetic testing because I have more than one child with autism. During this testing, the geneticist opened a case for me, and I've begun testing for something that I've had all my life, but has been getting worse. Thankfully, now I know for sure and I'm being tested for mutations in the COL5A1 gene. I scored the highest you can score on the physical examination and meet the requirements of having this disorder 100%. EDS is a connective tissue disorder. I am thankful that my multitude of symptoms all have a reason now, and none of this has ever been 'imagined,' even though there is no cure for it and no real treatment. If you have EDS or have a child with EDS, and have any useful tips for me, please leave me a comment and let me know. It is possible that my daughter also has it because she has the same loose joints and hyperflexibility in the same joints that I do. We are also unsure if she has autism, the Asperger Syndrome type, like her two brothers. Little did I know, the same genes can be responsible for EDS and Autism. Thank God for the one person who listened and who cared about my family enough to push genetic testing.
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