name is Maram Abu Goura. I am a 29 years old female from
Jordan and I was diagnosed with GT since I was 5 months
old. My parents are first cousins so the doctors said I
might have got it cause my parents are relatives and so
are their parents.
I was a child I hated GT and hated myself and the world
for not being normal. Feeling that different was a big issue
as a kid specially when you are being teased by other children.
I would go
back home from school crying my heart out not wanting to ever
go back to school. My mom would talk to me telling me that I am
special, she would say with special blood and yes there are a
lot of people better than me but I am better than a lot of other
people. Never did I understand her then nor did I believe her.
As a kid I went through allot of bad times, had lots of blood
transfusions, had platelet transfusion 3 times in my life. Bruises
weren’t a problem in my dictionary and until now. Do you
know the feeling when you see a bruise and wonder where did I
get it from cause sure I can't remember bumping in to anything
I think my
life had only two very bad near to death experiences. The first
one was when I was 9 years old, had appendectomy. I had the operation
done in England, can you imagine they prepared me for two weeks
to get ready for the operation and got my hemoglobin up to 11
but I went out of the operation with a hemoglobin count 4! And
this stage in my life needs a story of its own. If you ask my
mom she would say it was horror time for her.
partly dead stage was when I was 16, the year after I started
my period. At that year I needed blood transfusion monthly after
every period so my body started to produce blood antibodies and
then at some time they thought that was my end cause I had blood
transfused on Sunday and on Wednesday my hemoglobin was 3.7. Went
in to a shock, my mom took me to the hospital dead but only in
the eyes of the doctors, not in my moms eyes. She made me hold
on to life, planted a lot of faith in my heart, told me I have
a very long life to go and a lot of roads to walk through, and
in her words I believed so I kept on going on no matter what I
had to face. Nothing could stop me. I finished high school, went
to university, got a BA in law and a masters degree in general
Lately I have started some GI bleeding. I don’t think its
that serious but I went to a great doctor and he told me, "I
promise you nothing but together we can manage it and handle it."
He said believe in God and then you will worry about nothing.
The funny thing he advised me to take yoga cause tension is bad!
What I hated
the most was having no one who knows exactly what am talking about.
My mom is great, I knew she feels with me but she never knew what
it really means. Do you know what made me a strong person? It’s
the smile I always saw on my mother's face when I am laying in
the hospital bed, death standing at the far end of my bed. She
would smile & kiss me, but truly I saw her heart crying. And
when ever I feel I am tired I act strong just not to make her
heart cry. She means the world to me.
is we are as normal as any other person in this world, or we are
much better off than some of the others. This is the summary of
my life’s story. I hope it is of any help to any of you
and I would love to talk to everyone and share experiences.