EDS Momma

I have Ehlers-Danlos Syndrome, its a degenerative genetic disorder that affects collagen. Collagen is in every system of your body so it affects everything from my brain to my joints. The main issue is that my joints are very loose and move out of place too much, I need braces to help keep them in place and prevent a large amount of pain. Basically, normal muscles work like rubber bands but mine stretch like old gum causing tissue damage and pain. My gut, heart, and skin are also fairly messed up. There are also other disorders that are commonly related to EDS, some involving the heart, others involving immunity, skin, and more. I need to see specialists and have certain tests done to assess whether I need more treatment.

I have no insurance, I was kicked off my insurance 2 years ago and the medical bills are pilling up. I need help to get braces, see specialists, and pay off bills for medicine and doctors visits.


I need to see a cardiologist, oncologist/hematologist, geneticist, and my primary doctor. I also need physical therapy frequently to learn how to put my bones back into place myself and strengthen my muscles. I need ring splints for my fingers, and braces for my knees, ankles, and hip.

I have a goal of being able to see the EDS specialist at Johns Hopkins someday in their EDS clinic but for now just covering my medical care and buying splints is the main concern. A tilt table test to check my heart is $2800 alone. If you can help a single mom get treatment and answers I will be so grateful.