Eva

My name is Eva, I am an Australian living in England and I was diagnosed with GT when I was 7, when doctors suspected that I had leukemia. I am now 32 and this is my story. My fiance found the website and I can't say how happy i am to hear from other people who have the same disorder. On the one hand you try to live as normally as possible, but when bleeds or subsequent problems occur, there are few people who can relate to it. How many of you have tried telling your boss you needed the day off because you had a nosebleed and found them looking at you if you were mad? I just stick to food poisoning as an excuse now.

By the time I was 20, I had had over 50 hospitalisations mainly for nosebleeds alone. I too had extremely heavy and painful menstrual periods, but fortunately for me, I had severe endometriosis and had both of my ovaries removed when I was 18. Again, bleeding was not too bad, with several platelet transfusions obtained from my mother the day before, pressure bandages and loads of tlc from my doctors who became my second family. I say fortunately, because the relief never having periods again was enormous. I had severe cramping and bleeding of up to 2 weeks in every 4. Needless to say, that having this from the age of 11, made me quite fed up to the teeth with it. To this day, I take HRT constantly to avoid having them and still do not miss them nor PMT. Long before this operation, I had decided not to have children anyway, mainly as I did not want to pass the gene on but also because of the health risks.

You do seem to grow out of the nosebleeds, although bruising is always prominent. My parents were also acused of abuse when I was at school, and it took quite a lot of letters from the doctor to set that straight. I did get a nasty blackeye from a squash racket once and my boyfriend got very nasty looks from acquaintances for a long time after that!

I still get nosebleeds now, although nowhere near the frequency I had them until I was about 20 and letting it bleed and clot in its own time seems to work most of the time. I have found that living in a very humid climate helps a lot. After living in Hong Kong for 8 years, I had only 3 major bleeds, but since moving to England a year ago, I have had 4 major ones with my first hospitalisation in 10 years this week. Luckily after 24 hours of bleeding, it seemed to stop of its own accord and it did not need packing, a procedure I have come to dread after some very nasty experiences. I have used a humidifier before and that seems to help but I was hoping that my nose would acclimatise. Back to using the humidifier now.

I hope that mothers with young children who have GT can gain some hope from people who have grown up with it. It can be supremely frustrating, but you do meet wonderful people along the way and I think it gives you a greater determination to to do things as a result. To the great consternation of my mother, I even did car racing at one stage!

I will forward your website to my doctors in Australia in the hope that some more Australians get in touch with you.

Eva