Hello

I am 17 years old and i have been diagnosed with bardet biedl syndrome. I have had 6 fingers on one hand, 7 on the other, and 6 on my foot, they got removed in surgery when i was in 1st grade and younger. I am obease i weigh about 230lbs and i am 5 foot 3 in. and I wet the bed till i was about 13 due to my kidneys. I dont have any mental problems or sight problems, but they watch my kidneys and stuff. I am supposed to see a doctor at least every year but I havent for about ten years. I know i am very lucky to not have a lot of those mental problems.
i just really want any help I can get please. thank you.
christine771993 christine771993
18-21
2 Responses Jul 20, 2010

Hello Christine, how are you doing at the moment? I think you are now 21-22. Kind regards, Nancy

Hello Christine, my grand daughter is almost 12 and was just diagnose a year ago, we new since early on something had to be wrong with her. She is my step grand and wasn't any my family til she was about 2. I was told she was born with and extra toe, and always over weight, yet no doctor told my daughter in law anything. Her eye sight started gettin bad at the age of 4, i think and has progressively has gotten worst and is declared legally blind at this time. She was taught to walk with a cane this past summer for this school year. she probably has approx. 10 to 20% vision left but gets worst as the months come. She has very little mental delayed. if any its just inmaturity and with the proper material and an aide at school she will excell. so the school feels. I would love to find out more about support groups near by and more about this syndrome. it is very rare but so far she has so many of the symptoms. she too is about 230, your height and she is not 12 yrs of age til November. her name is asya and i am so blessed she came into my life. i help my daughter in law alot at finding doctors and such for her. my daughter in law is actally at a lost with this syndrome, as we are to. it was harder for she to accept such a harsh syndrom that has taken asya sight . we see a mediacal doctor in a couple of weeks so we can make sure there is no rinal disease developing, although she too wet the bed til she was at least 7. not sure christine if i help any, i think i just needed to vent..oh my name is Renee<br />
oh and near by would be in the Lafayette, Louisiana area.