The story of Morganne
I am a 23 year old female suffering and surviving. I have had several diagnosis slapped on me such as Ehlers Danlos Syndrome, Proctalgia Fugax, IBS and Dysmenorrhea with a host of other diagnosis that are being looked into such as costochondritis, sarcoidosis, and rare fungal infections. The scariest, most crippling and most mysterious symptom is my chest pain. Almost everyday, I scream like I am being murdered (at this point I am afraid of eviction) and drop to my knees, clutching my chest while telling myself, “not today, you’re not going to die today” The pain is indescribable and tremendous. My vision goes white. I actually feel as if I may die in the moment it strikes. Sometimes there is warning with a dull crushing pain that increases before the attack and sometimes it is out of the blue. All they have found are a dozen or so ‘ground glass opacities’ in my lungs. I have been told by specialists this should be unrelated to my chest pain (I was also told my ping pong ball sized lymph nodes removed from my groin wasn’t supposed to hurt either, however they definitely did and I had emergency surgery to remove them because it was believed I had a bad hernia) and that I may have some sort of auto-immune diease. I have been living with this assualt on my chest for almost 4 years now. Each time it strikes I am still amazed that I retain consciousness. I have never had a normal life and all things I did to cope, thanks to my EDS, I can no longer do. I have been feeling so hopeless but this site and all the rare disease awareness that has seemingly sprung up in this past week has given me a spark of hope again. Thank you for caring enough to read the summary of my story.