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Lynn's Story

Hi, my name is Lynn and Im a 14 year old girl who has been suffering from cushings for probably the last year or so.

I noticed symptoms last may when dress shopping and noticed some hair growth on my chest but didnt think much of it. then during the summer and school year I gained weight very quickly and couldnt understand because I was doing sports and barely eating because I thought i was over weight.

It came to the point where i obsessed over calories. I didnt see how my face could be getting so HUGE but the scale said I lost 10 pounds. then it went to the point where i couldnt focus in school and people gave me horrible looks because of my apperance and attitude change. I became cranky, tired, and mean.

finally my mom took me to the emergency room and all the testing and searching started. I went to get blood drawn and was taken out of school for the last month or so. luckily my principle understood. So days became tough, I was at home and i got incredible back and joint pain so walking was hard, I couldnt shower by myself or i might fall over, my mom had to help me get dressed and do simple things. My appetite became so incredibly enormous, I would cry over food and making descisions on what to eat leading to anxiety attacks and huge stress.

it came to where I would sit in the kitchen and wait for it to be lunch time. I would have to try every cereal before picking one at breakfast and insisted on helping with cooking dinner just to be near food. so of course i gained back pretty much all the weight i had spent months working furiously to get off. my mom was amazing through all this, she called doctors non stop in search of good local help.

we eventually found endocrine people up at yale who told us I had cushings and that I would need to check my adrenals and brain. But by then i was displaying about every symptom you could have-I have stretch marks all down my legs and thighs my arms and sides of stomach and breasts. my arms and legs thinned, I loose hair like CRAZY! its also very dry and brittle. I have the panic attacks too, insomnia, backache. hair growth on my chest, belly, upper lip, all under my chin and my sideburns grew down around to the back of my neck. I also have a very swollen stomache and large upper abs I have the moon face and thick neck and also the buffalo hump and back obesity. I also bruise very very easily and take along time to heal. oh and TERRIBLE ACHNE....

well we found there was nothing in my adrenals so I got an MRI and they found a tumor in my pituitary gland. my cortisol levels were at 650! instead of the 4 it was supposed to be. so as my mom said "I was cooking" we found an amazing surgeon at Yale and bam! I was scheduled for a surgery.

Well I had it and all the doctors thought I was amazing, the "miracle girl" for recovering so quickly and being up on my feet 3 days later. not much pain either. but heres the thing, after these surgerys your glands arent working by themselves, so now i take sterioids to tell my body what to do. so i still have high cortisol, but its fake.

So I am still over weight and swollen and i still have all the symptoms of cushings and its horrible, I feel like im not a normal kid anymore and I have school in a month. I dont know how long it will take to wean my off the medecine and to get back to normal.

I am embarrased to see friends and lost touch really with all of them. I just want to look pretty again, you know? its hard being like this when your a sophmore in high school. I mean everyone says to have faith. But walking in front of a mirror is a daily occurance. and going swimming and having to wear my mom's old bathing suit is not a good feeling. just like having none of your clothes fit and having to wear her tee shirts too, and still look big. or feeling fuzzy all around your head, and not having a neck really anymore. or seeing the strands of hair all stuck to your arm when rinsing out the conditioner in the shower.

I know it will take almost a year to probably get back to the way I was a few years ago and i have to be patient . but its very depressing. and I could have died if things went any further....................................Being a child with this is rare-like extremely rare. So Im special like that, and hopefully I will heal specially too. but if anyone here has gone through this please, when did your symptoms start going away? and what did you so to loose the weight?<

(MaryO Note: Lynn didn't give authorization to include her email address. Please contact her through the message boards.)

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