HELLO I'm Irene (Glanzmann
Many of the stories remind me so much of my struggling with GT as
a child. When I read the stories I cry. Don't worry it gets better
as your child will become older her insides will become stronger.
I sure know better than anybody. I was diagnosed when I was born and
so was my brother. I am a female at 25 yrs of age. I was transfused
when I was born. The stress of birth caused redness and bruising.
Removal of the umbilical cord was enough of a bleeding episode that
I was tranfused. Nosebleeds and bleeding gums followed up until I
Prevent nosebleeds by keeping a hat on her head when out into the
sun. This is most important she should usually be in the shade. The
very hot sun is what brings it on. HUMIDIFIER, HUMIDIFIER very important
keeps the mucosal lining of the nose nice and moist and the child
should not experience as much bleeding. When there is a nosebleed
never tilt the head up. The blood could make the child naseous from
swallowing the blood. Always hold the nose hard. And put lots of pressure
with forefinger and thumb on the top of the bridge of the nose while
holding the nostrils closed. It works but you must hold for a while.
Pressure is the key with this disease. Sometimes I would have to hold
my nose for an HOUR. Another good point VASELINE when she's going
out into the sun. Put it into her nose.
I also bled from the rectum as a baby. I was christened and filled
the basin of water with blood. So of course that affair was cut short.
I'm not too sure what would help that but as children grow the blood
vessels become stronger in the area during excretion.
In terms of the gum bleeding that becomes a problem but she passed
the stage where the teeth come in. When your childs teeth start to
fall out apply pressure again don't stop even if it causes her a little
pain. That is the best way. They also have the medicine AMICAR (Aminocaproic
Acid) that seemed to work very well. She can take it in liquid form.
Always have a bottle in the house. A cauterizing stick from the pharmacy
is a good thing too. It helps nosebleeds and gum bleeding. Tobbacco
can be placed in wounds and where teeth have fallen out. Excellent
I am so excited about this website I have been through so much with
this disease. Please email me back. I can help you with almost every
question. I also have a background in medicine so it easier for me.
I have also received the best treatment.
Irene and Gus Kontalipos