Ask Irene

HELLO I'm Irene (Glanzmann patient),

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 was five.

Some Advice:

PREVENT NOSEBLEEDS
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.

Rectum Bleeding
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.

Gum Bleeding
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 cauterizing effect.

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
Brooklyn, NY

agapi98@aol.com
Ikontalipos@thoracic.org


 
Submit pictures, stories & contacts to Helen Smith. See the contact page.
 

This is a non profit website. The goal of this site is to provide the general public, parents, loved ones, and the medical community with accurate information. All information is taken from sources believe to be reliable. No treatment of GT should be undertaken without your medical supervision. Donations should be made to the Glanzmann's Research Foundation. All donations are tax deductible.