So if you’ve been on this groups recently you’ll know I asked about many illnesses, Dysautonomia, EDS, etc.

Yesterday I finally got a name for what’s been going on with my body. I have a rare condition called Marfanoid Hypermobility Syndrome with Hypermobility Arthritis.

It’s weird to say I was almost happy when they diagnosed me. More relieved than anything to have a name. It took 5 years to get diagnosed with seizures so getting a diagnosis for this was another amazing feat. It’s not curable and I will have pain for the rest of my life but I have a name and I know how I can prevent too bad of damage throughout my body.

I’m here to say if a doctor tells you they won’t do a test because that disease or illness is “the rarest of the rare.” Then find a doctor who will do the test. All it took was an in depth physical exam for me to get diagnosed and my pcp could’ve figured it out but used those exact words in that quote the last time I saw him. He could’ve been the reason my aorta failed or I dislocated a joint. Push those doctors for answers because if you don’t then no one else will!