My name is Tasha and it has been two years since I randomly had a subclavian aortic aneurysm. The aneurysm is also the reason why I now have Horner’s syndrome and a paralyzed diaphragm. Since then I have been diagnosed with Vascular Ehlers-Danlos Syndrome and so has my Aunt, Mom, and brother.

Vascular Ehlers-Danlos syndrome, also known as Ehlers-Danlos syndrome type IV, is a life-threatening inherited disorder of connective tissue, resulting from mutations in the COL3A1 gene coding for type III procollagen.

It is frustrating to have a rare disease because there is no confirmed knowledge anywhere and there are no specialists that can tell you what you can and can not do. It is extremely  hard to watch my mom in pain and to be so exhausted the majority of the time.

It would be great if there was more information so we could better understand our condition and help my mom with her pain.

2 thoughts on “Vascular Ehlers-Danlos Syndrome Afflicts Four Members of Same Family”

  1. christy says:

    Tasha,
    My heart goes out to you. I, too, have Ehlers-Danlos Syndrome. I was diagnosed with a severe case of EDS (hypermobility type) and now some of my doctors agree that I need to be checked for the vascular type as well. I totally understand how you must got through major frustrations with the medical community because they seem to be totally in the dark when you inform them of the VEDS. I experience it every single time I see a new doctor. I had been telling my PCP for almost five years that I didn’t think I had fibromyalgia or chronic fatigue syndrome and rather felt I suffered for EDS. However, it didn’t matter how many times or how much information I showed they never believed me until my podiatrist actually diagnosed me with it. Again, I must you & your family are in my thoughts & prayers. Thank you so much for sharing your story!

    Sincerely,
    Christy

  2. cheryl turton says:

    Look up Dr. John mitakides in Beavercreek, Ohio.

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