I'm 21 in college and I have Klippel-Trenaunay-Weber (KTW) syndrome. They had to amputate my entire right leg at birth. throughout middle school i was plagued with constant infections and was in and out of the hospital. As of recently i've had alot of trouble keeping up with classes in college and have been seeking treatments to get the diesease under control. i'm about 3 semesters behind on where i should be and this summer semester is distroyed because i just was hospitalized for an unknown pain in my lower abdominal that the doctors believe may be diesease related. I just wanted to talk to people who may be living with simular conditions around my age and maybe i could feel better. A long term girlfriend just left me a few months ago because i couldn't handle the stress from the diesease/school and i made the mistake of allowing it to burden our relationship. i'm begining to get so depressed now about school and life that i can't sleep at night because of constant nightmares. i'm fearing that i will not beable to complete college and obtain my degree because of this. i'm sorry if i may sound whiny but i just wanted to talk to some people about things and see if anyone else has gone through simular situations. i've even begun to lose my mobility in the last 3 years. i just feel like its consuming me. i'm going to go see my doctor for a follow up to the hospitalization and i'm thinking about taking a year off of college to try to get some more intense treatments or something. some of the laser surgery was very sucessful while some areas it wasn't. we are talking about moving on to some other options such as radiation, or general surgery to help with things. hopefully we'll find something to help with things. i just really really would like to live life in a halfway normal way, get out of college, get a job and not have to worry about if i am going to beable to perform my job without being hospitalized suddenly or becoming sick with infections constantly. I'm a computer science major and i'm probably going to work as a programmer when i get into the field once i get my degree. I don't even mind having one leg in life and all its just all the stuff that comes with the diesease is so hard. i've delt with it for 21 years the best i could with out complaining and as of recently (the past 6 months) i've just been worn down physically and mentally so much that i can't stand it any more.
I am sorry to hear about your medical problems you are having.
I am sure you have seen some of my posts so you already know I have a facial PWS. I to have had several laser treatment. I totally understand the ups and downs of the lasers working in some areas and not others. I had three plastic surgeries because of some areas where growing.
Have am sure you have looked into it already, but have you contacted the KT expert on the front of this website? He would be able to over his advice on the subject matter. I personally do not have KT, but I do have Sturge Weber Syndrome which has KT listed as part of SWS. I have heard of other people that have had internal birthmarks. It is a scary thought but you might want to see an adnomenal doctor just to make sure nothing is really going wrong.
Hopefully someone else with more info of KT will chime in soon.
Hope to talk to you soon.
I've managed to work my way through another semester successfully. Durring the semester, I started seeing a university psychologist about my depression. It only helped me temporarially and he did tell me that I am "clinicly depressed" and recommended anti-depressents coupled with once a week therapy sessions. I refused the anti-depressents but did go thru with the therapy. It helped me get through the semester and allowed me to function well enough to get my school work down. I'm going to continue therapy when the spring semester restarts.
I've exhausted all options in New Orleans for treatment and all of the specialist down here are pointing to Boston and New York to seek further treatment. I've scraped and saved up enough money for a plane ticket over the semester. At the moment, i'm collaborating with the specialist here to get the names and numbers of doctors they recommend for my threatment. Dr. Poole, who is listed on this website, recommended for me to see Dr. Milton Waner in New York. I'm still waiting for another speciallist from Children's hospital of New Orleans to call me back with his recommendations for two doctors he knows of in Boston.
My mobility is still getting worse. A few weeks ago, i was doing some cleaning around my house i'm renting while in college after the semester was over and i became so exhausted that i couldn't move the next day because of how soar and weak my body became. I think the lack of everyday mobility has taken a small toll on my body and is causing me to become out of shape to the point where i don't have the endurance for prolong movements. I'm trying to force myself to move more then i did durring the past 11 months to try to jump start my body into getting its mobility back and getting back in shape to maybe counter act what the diesease is doing to me a little but its extremely hard due to the ammount of pain i go through.
I'm really hoping i can get help in boston or new york with these problems. I lose so much sleep at night due to so many different things. The diesease, the lost of my last g/f who left me after 5 years because of problems i stated in my previous post, pain that i experence from the diesease every night, thoughts about this trip to the northeast for treatment.
I literally have nightmares all the time about these things and i'm actually really really scared about this trip because i'm going to have to go on my own. All of my family can't go, my mother just had a minor heart attack and can't make the trip. My brother can't go because he can't afford to due to the nature of his job, he can't leave it. My father can't come with me because he is helping my grand father on the opposite side of the country because his dad is on his final days.
There usually isn't much that i fear in life but without a doubt something that scares me is when i'm in a doctors office by myself. I can ear nurses and doctors talk about me and colaborate about me outside the door even when they close it. I've even had emotional breakdowns before and after doctors have came into the examination rooms where i just burst into tears. usually the moment i hear them step back to the door i some how recompose my self but i know they have to notice the remains of tears on my face. I use to have my g/f to lean on for these things. I would still feel this sadness in doctors offices with her there but i never would break down mentally over it. Over the last 11 months i've really really lose it when ever i go to a doctors office. Durring the summer when i was in the emergancy room it got so bad that they couldn't draw blood from my arm because my forearms were so tense from the anxiety.
I'm sorry again for seeming so downbeat. I am happy that i've found a way to get the money to fly to boston or new york for treatment. and my father's medical insurance should cover everything. its just i feel overwhelmed by everything and really want to talk to other people that are or have experenced the same thing as me. i just can't state how scared i am. or how alone i feel.
I'm sorry to hear about everything you are going through. Though it's great to hear that you are going up to New York to get treatment (or Boston). I have heard a lot of great things about Dr. Waner. I wish that I could go there for treatment, but I just can't afford it. I know it must be hard going alone, but you will do fine. Just know that they are there to help you. You can do this. Good luck with everything.
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