I have earned my stripes

The story of Melissa

I am a 42 year old woman with Ehlers Danlos. I also have many of the conditions and problems that go along with EDS including Chiari Malformation, tethered cord, Mast Cell Activation Disorder and POTS.

I had symptoms from the time I was very young and was told I was a hypochondriac, a drama queen or just plain crazy. I wasn’t officially diagnosed until I was in my 30’s. By that time I had lost nearly all my faith in doctors.

After a bout of paralysis in 2009 I met my geneticist Clair Francomano. She, along with my neurosurgeon, Fraiser Henderson have put me back together.

Unfortunately, this is a degenerative disease with no cure. It makes me incredibly sad that my daughter may have this disease too and deal with some of the things I have. We need to raise awareness as much as possible so that not another person will die from complications of EDS. It will be a good day when I don’t have to explain or spell Ehlers Danlos for doctors.