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.