Friday, August 14, 2009


I am a senior with Ehlers Danlos Syndrome (EDS), a genetic disorder which causes the body to produce faulty collagen. Collagen could be described as the glue that holds the body together, because of it my joints are really flexible which causes them to be unstable and to dislocate often. My skin is fragile and I have a really hard time healing and get wide scars from every thing, it also affects some of my hollow organs like my bladder and digestive system. It is not degenerative, but because I don't really heal and my joints are always getting damaged from dislocating, the damage builds up over time so the problems grow the older I get.

The first clues that I have EDS started when I was weeks old. My hips would "pop" when my diper was changed and when I got dressed, as I got older and was able to express myself I would complain of pain in my joints (especially my hips) and the doctors would always say that it was in my head, that I was trying to get attention, or it was just growing pains and if I ignored it or got stronger it would go away. I was unable to hold a pencil correctly, do the monkey bars or pull ups, or throw/hit a ball with enough force in PE. Fearing that I would recieve the same answer as always if I told anyone that it hurt when I did these things and made my shoulders, hands, knees, etc hurt and pop never said anything about it. I avoided the monkey bars but worked doubly hard at home practicing throwing and catching balls and tried every pencil grip on earth to no avail in fact all the practicing just made things worse. So I would stay away from the center of the games in PE and my teacher just assumed that I was afraid of getting hit by the ball(which was sort of true because it hurt) there were many a day that I left PE in tears.

Seventh grade I had agonizing pain in my left knee and had 3 epidurals (one that was left in for a month, one for a week, and one in and out), a sympathetic nerve block, two joint injections, a year of PT and seeing a rehab psycologist before a 45 minute arthroscopic surgery rid me of the pain. Because once again, they decided it was in my head, since they could not find a source for my pain on a MRI and the epidurals never touched my knee (we now know this is because of a septum in my epidural space). Finally on Halloween of 07' I was diagnosed with EDS. It caused the problems with my knee, all of the pain in my joints, and several malformations (pectus excavatum, deformed hip sockets and femoral head/neck). I have had 2 surgeries on my right hip (surgical dislocation to fix a labral tear and smooth the femoral head and neck, one to remove the screws). The last year complications from EDS(including the surgeries) has earned me 21 total days inpatient at Children's hospital as well as almost weekly appointments there, PT, OT, and 5+ ER visits.

I also have had chronic migraines since the age of four. However it wasn't until I was seven that they were actually diagnosed. Once again the doctors believed that it was a ploy to get attention or that I was anxious about school. They later morphed into hemiplegic migraines, which left me with slurred speach, and right sided hemiperisis. Only high doses of prednisone would get rid of them. My freshman year of high school I had a hemiplegic migraine (or so we thought) that was triggered by a heating pack in PT that lasted 18 months it was dubbed a conversion disorder (phycosamatic) and ignored. I was eventually put on a high dose burst of prednisone to clear up a blistered rash on my back and my right arm started to work again, so plaquinil was added to the mix and I regained full use and haven't had another since. It also got rid of my daily fevers (100 +), mouth sores, some skin sores, and heat control isues, and some photosensitivity. I have been tenatively diagnosed with an unknown autoimmune disorder, but will probably eventually classified as lupus as my mom has it too.

I will hopefully graduate May 2010-I am .5 credits short because I have only been able to attend full time one year. I plan to attend CSU and study chemistry and soil conservation.

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