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Genetic testing needed for vEDS

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I am raising money to have much needed genetic testing for vEDS or Elhers-Danlos Vascular Syndrome. EDS is a genetic connective tissue disorder. I have had a 4 year battle of finding out what medically is happening to me while trying to be a single mom of two beautiful children. I have suffered a stroke, vertebral artery dissection, muscle ruptures, a new issue with my heart mitral valve causing regurgitation, and many various hospitalizations. I finally was seen by a Rheumatologist who has diagnosed me with Ehlers-Danlos Syndrome and referred me to see a Gentisis who specializes in EDS, the doctor informed me my insurance would only cover the office visit and not the needed genetics testing I really need to determine which type of EDS I have. The vascular test alone is $1200.00 without any other needed testing to see if i also have other types of connective tissue disordes or EDS traits the many vascular anomalies I have had in the last 3 years they strongly feel I have vascular EDS which can be life threatening if not diagnosed and watched carefully. The saddest truth of this is that it is genetic and can be passed onto my two children as well. My goal is to have my gentile testing done if positive for vEDS I will have my children tested so they can try to avoid the pain and medical disasters I have faced. I have attached the EDS organization website if you want more information. Please help me and my family get the answers we need to manage this syndrome.

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  • Erin Dalbec
    • $50
    • 9 yrs
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    • $303 (Offline)
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  • Anonymous None
    • $25 (Offline)
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Organizer

Danielle Lee Anastasio
Organizer
Norton, MA

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