Help me raise Ehlers-Danlos syndrome awareness! Info on EDS here: ehlers-danlos.com/what-is-eds/
I am Melyssa K and I have Ehlers-Danlos syndrome. My major symptoms began in 2010, years after I joined the Deviantart community. Ehlers-Danlos syndrome is known as an invisible illness because one with it may look no different than someone without it. EDS is a genetic condition that affects the production of collagen, the body's glue. It's made improperly so tissues composed of collagen are too elastic and are prone to damage. Symptoms include joint hypermobility, widespread pain, joint dislocations and subluxation, ligament and tendon tears, spasms, extremely tight muscles, tendinitis and other types of inflammation, astigmatism, easy bruising (easily ruptured blood vessels,) increased scar formation, delayed wound healing, hard stools that cause pain and bleeding, tolerance to certain medications, gastrointestinal issues, and has been linked to POTS and MAST cell activation syndrome. It's rare and not well known in the medical community or among the public. It would be more common but many are misdiagnosed or die without ever getting any diagnosis. It took over six years, countless nights crying in pain and despair, five rheumatologists, and several other specialists to get me a diagnosis from a great doctor, Dr. max Shenin. I was diagnosis about five months ago. I was mostly dismissed and not taken seriously by any doctor until I saw him, even though the pain made me suicidal and stop eating at times. I endure chronic and intense pain in my wrists, elbows, shoulders, back, neck, knees, ankles, feet, and sometimes my hips, sacroiliac joint, and fingers. I dressed up for my friends' engagement party today. I decided to not wear my knee braces because the outfit looks better without them. You can't see my ankle braces under my boots and my orthotics would not fit in the boots. I am in pain 24/7 and have been unable to work for two years. I had to quit college because of the pain in my knees and wrists. I had to use crutches to commute to and from college and still use them if I'm on my feet for over an hour. I've been in physical therapy on and off since 2009, my current gym regimen consists mostly of physical therapy exercises, and I've have had foot and wrist surgeries as a result of injuries caused by my EDS. I'm currently taking about 10 medications to manage the symptoms of my various condition. I will likely need more surgeries and stronger pain medications in the future. I'm currently pursuing disability because my bank account can't last forever. I'll never be able to live on my own because I can't do much house work. Every time imove, I risk tearing or spraining my connective tissues. My true friends understand I have limitations, but some people think I'm an attention whore, a hypochondriac, or are too negative. Living with EDS is like being trapped in a body that is slowly falling apart at the seams.
Some of the things I can no longer do or are limited because of my EDS and the pain it causes:
Jump, run, crouch, work, pivot on my feet, draw for more than fifteen minutes at a time, play guitar, bass, and drums, roller blade, go to college, lean on my elbows, wear thin heels, walk long distances, skip, sit on hard surfaces for more than ten minutes, sleep in my bed without lots of cushioning pillows, open jars, chop hard vegetables, lift moderately heavy things, spar with friends, and many more activities people typically take for granted.
Some other conditions I have, some directly or indirectly caused by my Ehlers-Danlos syndrome, some unrelated.
Bursitis in knees, shoulders, and hip
Tendinitis in knees, wrists, and inside and outside of elbows
Cubital tunnel syndrome
Patella tracking disorder
Tear in TFCC in wrists
Polycystic ovary syndrome
Melanoma (successfully removed. Cancer-free since 2010)
Osteopenia caused by hyperparathyroidism (surgery removed the tumor)
Kidney stone in 2007 caused by my previous hyperparathyroidism
I also happen to be transgender. My gender identity is androgynous, but I'm more male than female. However, I've decided to keep my woman body. I'm also asexual!