Re:My son's PWS & complications
Hi Trav's mom
My name in Hank Bartenbach, and I am 20 years old and I have PWS accross my face mainly on the right side, I also have it on both eye lids and on my nose. I also have Vascular Malformations (hemangiomas) on my lip above both eyes and starting from the top of my forhead and goes all the way back to the crown of my head. PWS has gave me 70% hearing lose in my right ear because I have it in my right ear and I also have it on my top jums.
I got my marks from when I was still in my mother, when one of my internal crated arederys did not connect in my head and when I was still in my mother and the blood started to go thru my body it made the marks.
So far that I know I only have PWS on and in my head.
I have not had many complacations that where very serous, but I lived. If I ever got a good size cut on the right side of my head the doctors said they would not be able to stop it from bleeding.
I am very sorry to hear what happend to your son and I was wondering if the doctors every told you how he received his PWS.
I know it is a natural birth defect and that it is not gentic suposeably.
But it seems strange that he has it in different parts of his body like it was an ardery that split and went to different parts.
I also was wondering what state you live in because I live in Nevada and if you are close I would like to meet your son since we are the same age.
I am glad you let your son choose weather he wanted his marks removed or not because my parents did not give me a chance and I started laser treatment at the age of five not that I am on my own I still do laser treatment and now it has been almost 15 years.
My birthmark has not changed very much expecally where my Vascular Malformation is but everybody is different and they way they deal with it.
If you could email me back and we could talk some more I would like to here from your son in how he dealt with his PWS in his life and we can share storys ok.
I hope to talk to you soon.