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.
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
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.
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