Hi Dr. Phill,
My name is Aimee. I'm 16 years old and for the past 7 and 1/2 years i've dealt with a life altering illness that is unlike any other. Infact, i'm the only person with this illness. It's so rare, it doest even have a diegnosis. If i ever do get a diegnosis it'll be because the doctors make up a name for it. The illness mostly effects my skin, joints and muscles, and pelvic area. However, over the past 2 or 3 years i've developed tons of smaller issues due to my illness. When my skin flares up it's literly like dealing with a burnt patient: my skin burns horribly bad and is bright red for about 4 days, then it gets extremely tight and looks like crocodile skin (it's so tight that if i don't keep it hydrated my skin tears, and has before) for another 4 days, finally my whole first layer of skin peels off and this can take up to a week. This whole proccess is very painfull and durring the two weeks i am totally unable to move because of the skin being so painfull. My joints and Muscles are that of a 60 yr old woman with arthritus. Each and every bone, muscle, and joint is effected. Despite being on an infusion (Remicade) and a pill, both on the largest dose, my joints and muscles still prevent me from doing daily things and now ive lost range in one of my shoulders. This in itself is proof that my illness is progressive, and that it does not go away with aging which is very sadening to me. However, out of everything my pelvic pain is the worst. It is so extreme that i faint constantly from the pain, am in the ER constantly because of the pain, and was in the hospital (twice, each time) for a week for pain control. This has also gotten worse in the past year and it is very scary for me. When i faint my sats drop as low as 35! They should be around 90! I've almost had to be intabated because of it, and was transfered to the ICU once because my sats were so low. As you can immagine, this experiance has been very hard on me, especially lately. It's impacted my mood, self esteem, and even my friendships. I've heard the rudest of comments and try to put all this behind me on a daily basis. However, after nearly 8 years, it's wearing on me, but that's just my medical life. I've experienced some other really traumatic experiences. I don't want my illness to define me, or take over my life. I want to be myself and not let it get in the way of my life anymore! i know that i wouldnt be the strong person i am if i had never gone through what i have, and i love my life, but i just wish i could have one day to see what its like to be a normal teen, to have it easy, to have friends, to go places and do things. Can you help me Dr. Phill?
P.S. I partially came on this site because my life is so much different then the average teen, and (honestly) i thought that if i were to get onto your show i might be able to get my story out there and find someone like me.