Brandon
WORCESTER, SOUTH AFRICA

Brandon, now 2 years and 6 months old, was diagnosed with GT when he was 4 months old. As any parent would be we were devastated and shocked as we have never heard of it before and the little that the doctors knew were scary as well.

Well after nearly one and a half year on this site I’m glad to say that we’ve learned a lot, cope a lot more and living with it till this point. Although there is many trauma going with GT it’s already a lot easier as in the beginning when we knew nothing at all.

Brandon’s main problem is the nose bleeds. He already had 4 blood transfusions; luckily it wasn’t necessary for a palette transfusion yet. But he was submitted to hospital more than ten times already. To prevent much trauma for Brandon I try to stop the bleeding myself first at home with a Vaseline “plug” that I put up his nose. It helped a few times, but not always then we need to go to the ER. And as discussed many times GT is unpredictable. Not one bleeding episode is the same. And then we don’t talk about the peoples reaction when Brandon is in shorts and we are in a public place, I just told myself that I don’t care what people think of it, if someone approach me and ask me why he is full of bruises I feel so happy to tell them about GT and this is how the word is spread, and immediately peoples reaction and opinions change.

Apart from all this he is as normal as can be. He goes to a normal day care that takes really good care of him, giving him his medication and phone me immiedlty if there’s a sign of bleeding, and then I don’t say how many bruises his got, but he enjoys life like every other boy in the world. For sure there are limits, but you keep positive and motivated and live life to the fullest and make it easier for him, and I know now as all the parents told me in the beginning it’s getting easier as they grow older. And through the whole experience I personally can say that me as a parent of a GT child came so much stronger out on the other side.

I know the hard part is still coming when I have to explain why he can’t do this and that like his friends does, but I’m sure we can replace it with something he can do and maybe be excellent in.

As for the other GT moms and even adults with GT on this site, I want to thank them for all the support and advise and the motivation. It’s great to know there are people going through the same situation as we do and can rely on each other for help and advise.

And thanks again Helen for this site. I think everyone will agree that she and Chris are doing a super job with this site…..

Take care

Tina
Brandon’s mom
e-mail Tina


Hi there!! At last I found a site who support this disease.

We are from Worcester in South Africa. My boy, Brandon, now 1 year and 3 weeks old. was diagnosed with Glanzmans disease when he was five months old. We discovered it when we saw that he 's got like blue spots every where and the slightest bump or touch will leave a blue spot.

We went to Tygerberg hospital where they diagnosed him.

I don't know where it came from because neither my husband or my family have a history of this.

Well our first experience was when he was seven months old. He was in his walking ring when he fell from stairs and landed on his face. His teeth cut his lip and there was severe bleeding. It just wouldn't stop. So we went to the hospital in Worcester and they told me there was no medicine to give to him.

Although they had the report from Tygerberg hospital. I was devastated. So the following morning I phoned the professor who did all the test on Brandon and he phoned my GP for a prescription for medication to stop the bleeding. After he took the medicine he stopped with the bleeding. He bled more than 16 hours non stop.

At this stage I made peace with the disease, but no where there is a support group to help me. I want to know how to tell my baby boy he can't climb that obstacle or he cannot play rugby. Tell me how do you do that to a boy!!!!

Loving Mom

e-mail Tina

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