My 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.

When 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.

The second 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 law.

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.

The thing 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.

Email Maram.

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