Ever heard of Tuberous Sclerosis Complex

[poetryeclipse]

Have any of you Pediatric Nurse's ever heard of the genetic disorder called Tuberous Sclerosis Complex? It amazes me that I was diagnosed with Tuberous Sclerosis at the age of 1 and besides the Pediatrician that diagnosed me every other doctor I run into has never heard of TSC. Supposedly there are more individuals in the world that have TSC than every before and I was just wondering if any of you wonderful Nurse's have ever come across a child with TSC? I have a very very mild case of TSC, most individuals with it are mentally handicapped but I am not. I have the facial tumors and tumors in other areas of my body, but I don't have them on my organs. I spent most of my child hood in the john hopkins pediatric ward and I can tell you that the Nurse's that I met are the reason I am considering a career in pediatrics. I know I may change my mind a hundred times before I actually get thru nursing school but this is one area i would love to learn more about. I was just curious if anyone has every come across or heard of TSC.

~poetryeclipse~

[nightsinBoston]

We have had a couple of kids with tuberous sclerosis. Two were sibs, Mom did not know she had it until the second child got diagnosed. Her cousin came in with a child who had it also. There was one other child who likely had the diagnosis, she had greater than 30 cafe au lait spots, low set ears, developmental delays.

The problem with this disease is you only need one gene to pass it on. You can't guess how bad off your children will be. All of these children were delayed, the first two severely.

Good for you in doing so well. I wish you luck in your endeavors.

[NRSKarenRN, BSN, RN]

tuberous sclerosis alliance

my niece was diagnosed in 1984 with this problem. she has the most severe form --was given 4 days to live and is now 22 due to her parents loving care. multiple seizures a day due to tumors have caused her profound developmental and functional delays. she is total care. her smile lights up a room. low protein diet has been helpful to minimize tumor growth, show that love and great care can overcome other obstacles and teach others the value of life.

[rodg82]

hiya on the ward i work on we have probably 3 or 4 children i can think of straight away who come in quite regularly with increased fitting who have TS and we're just a local paeds ward not a specialist centre!

its great to hear you are doing so well-a positive story to tell the parents of babies diagnosed!