This letter was written by a young lady suffering with EDS, gastroparesis and more. Please read. Hi. My name is Jenicee and I am one of your fellow students. You may have seen me around occasionally over the past few years at school, usually in the school nurses office but I may have been in your classes with my head down on the desk with a hood pulled over my head. I have been labeled a bad kid by some, a drug addict by others due to the bruises all over my arms (literally from hundreds of IVs and lab draws), a lazy person, and weird by many more. I have been told that I am faking my sickness for attention or to get out of school, a hypochondriac, and a problem child when I was pushed past what I could physically handle and I reacted with anger. My mom was even accused of making me sick, which made me feel even worse because she wasnt. You see, I have been sick my entire life and we didnt know why. In January, I found out why. I am different from all of you on a physical level, all the way down to my DNA. I have a rare genetic condition called Ehlers Danlos Syndrome (EDS). The genes that tell my body to make collagen (the glue that holds my body together) are messed up. So everything in my body is not made right. The only good thing that comes from EDS is my skin is very soft and velvety! My nerves arent made right causing signals from my brain to either not get to where they are supposed to be or they get somewhere they arent supposed to be. I get a fever at weird times. I have a migraine headache everyday (it may only last an hour or two or it might last for days on end) even with three medications to control them. This is called Chronic Daily Migraine. I was recently in Ruby Memorial in Morgantown for over two weeks because I was in “Status Migrainosus” where my migraine was causing seizure and stroke like symptoms and wouldnt go away at all! I was given over 50 meds before it finally went away! Sometimes, I cant think right because my brain isnt getting enough blood. People with EDS call this a brain fog. I am now being evaluated for a condition related to EDS called Chiari Malformation where the base of the skull is wrong and it allows the brain to push into the hole where the spine meets the skull. This can damage my brain and spinal cord. My MRI is being sent to the Center for Ehlers Danlos Syndrome Alliance for them to look at. I suffer from depression and anxiety; I have to take medications to help with this. EDS affects my heart and blood vessels to the point my heart rates and blood pressures are screwy. I have to take a pill to control them. The reason I bruise so easily is because the walls of my blood vessels are thin and can break and leak at the slightest bump. I also have to get a lot of IVs because I get dehydrated frequently and I have to get blood work done often to make sure something isnt screwed up. EDS affects my lungs giving me asthma. I have to take meds to control the asthma. My digestive tract shut down over three years ago. This is called Gastroparesis. I have to take two medications three times a day to chemically stimulate my stomach and intestines to work. I take another med to help keep me from puking all the time and even another one to prevent ulcers. I can eat and drink a little but not enough to keep me alive. Everyone should have a healthy diet right? Whole grains, a lot of fruits and vegetables, and plenty of proteins. Well, I cant eat that. My body cant digest the fiber in the whole grains, fruits, and vegetables. The fiber would get stuck and have to be cut out of my intestines. I dont want to have surgery. Even though I can digest proteins, my body does it very slowly and too much will make me puke. Well, more than a few bites of anything can make me puke. I have a feeding tube that goes through the skin right below my rib cage right into my stomach. It was put in at Johns Hopkins where my gastroenterologist is. I have to have fluids with electrolytes added to it because my salt and potassium levels keep dropping which can kill me quickly. I also get a special liquid food pumped through it very slowly over night so I dont puke it back up. I also have to take extra vitamins because I dont get them from my food. This is what keeps me alive. My teeth have very little enamel. So, no matter how much I brush my teeth, I get cavities. Sometimes, I sweat when I shouldnt and dont when I should. I get sunburns easily. My joints are loose causing them to pop out of place at anytime. Ive already had two surgeries on my left shoulder because it kept completely dislocating. My immune system is weakened because my body spends all its time trying to heal all the injuries it suffers whether I know about them or not. It causes me to hurt badly and be extremely tired all the time. Because of this, I cant exercise the way we are supposed to. I have to take medications to help with this. There is no cure for Ehlers Danlos Syndrome. It will get worse as I get older. I most likely will need splints or braces on every joint including my fingers (I dont know if they splint toes too). I could end up in a wheel chair because crutches and walkers could cause my fingers, hands, wrists, elbows, shoulders and neck to dislocate. Treating the symptoms is the best any doctor can do today. The worst thing is most doctors have no clue what EDS is, what it does to people, or what to do about it. When doctors are going to medical school they are taught “When you hear hoof beats, think horses not zebras.” This is so they dont waste time and money diagnosing and treating people for funky things that are rarely seen. But I am the rare; I am a zebra. People with EDS are still human beings and deserve to be treated like it. Thank you for listening to my story. Jenicee McDaniel
Posted on: Sun, 27 Jul 2014 19:08:09 +0000
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