Hi, my name is Susan. I’ve been fighting Ehlers-Danlos for 50 years. I’m 63 years old now. I’ve been ridiculed by doctors telling me my pain was all in my head and that I was crazy. As the years went by, I became worse but never gave up. Each time, I was shut down and treated like I was some kind of junkie looking for pain meds or attention. I started getting anxiety attacks each time I had to drive to a doctor's appointment, knowing I would be ridiculed. 20 years later, my X-rays and MRI started showing some deterioration but not enough to prove anything. I would cry and tell them when I cough, my rib comes out and it feels like a knife has stabbed me, and they would laugh at me. I’d tell them I can’t turn my neck or lift my arm without my low back spasms. I can’t feel my legs at night, and I don’t sleep for days because of pain. This went on for years, and they put me on antidepressants because they thought I was depressed. I was depressed because they wouldn’t believe me.

Three years ago, I literally couldn’t get out of bed. I started spinal nerve blocks, and it helped. Then, I couldn’t lay down or my shoulders felt like they were coming out of my joints, and I had to sleep sitting up with ice packs all day and night. I finally was diagnosed with hEDS, but now it’s too late. Out of the 13 types, I have 4. The damage has been done because I was ignored and ridiculed. I just had my right shoulder repaired and need my left shoulder done. Both hands need repair due to nerve damage throughout my whole body. My jaw moves all day long, as well as all my joints. I have an unstable spine, severe ringing in my ears, POTS, my hands turn purple, my skin rips easily and bruises, internal bleeding, blood blisters for no reason, and I’ve been nauseous for most of my life. I’m a mess.

I filed for disability benefits, but that won’t kick in for almost a year. I’ve been researching stem cell therapy, and it’s the only thing I have left to cling to, but they don’t accept insurance. I’m hoping someone out there can understand my pain and help. I’ve done my share of helping others and hoping it comes back around.

Hugs, Susan