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Nora, 36

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I have a genetic disease, HHT, Hereditary hemorrhagic telangiectasia, also known as Osler–Weber–Rendu disease. This disease causes abnormal blood vessel formation in the skin, nose, organ and even brain. Since my full genome sequence was tested at birth, I could know my state and get continued medication and treatment from an early age. It can help me to reduce or even avoid serious symptoms and medical complications.

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When I became the legal age, I decided to register my DNA data into the open bank and sell it to third parties, such as researchers and marketing companies. My data is well sold, because it is rare. Thanks to the income from the open bank, I could cover my treatment fee and some of living expenses. It helps me manage my life, even though I work only a few hours in a day.

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For me, it was hard to find a proper job. When companies checked my health condition in the recruitment process, they worried about my health conditions and insurance fee. But, finally, I could find a part-time job in a touristic company that sells ancestry travel. My story is a really good marketing point. When people are hesitant about the price, I say “you will finally understand and accept yourself by following the track of your ancestry, just as I did as a person who has a genetic disease”.

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My life was fine as it was until now. But a week ago, I got a post from the court. My ex-husband has started a case over the custody of our daughter, Layla, which I currently have. He managed to access my genetic information from the open-bank, analysed it in a way against me, and is claiming he can offer her more security. My genetic disease is a huge disadvantage for me in this situation, since it is true that I have high risk of lung conditions and problems in my brain in the future. 

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