My Life with von Willebrand disease (vWD)

By Moline - Kenya

I was five years old, when I started nose bleeding frequently in a sequence of almost once in every week or after involving myself in activities like playing too much. People were saying that it's a natural problem or occurrence to some people and that it would heal up by itself as I grew up. I was even given herbal medication which did not help, visited a few clinics where I was taught how to manage it using very cold water; that is the normal first aid for nose bleeding and putting cotton wool swabs with liquid paraffin in my nose, which would reduce the frequency of occurrence. I was very eager to see the problem end since my parents could not afford the clinic visitations with my father earning only 3 dollars per day at that time plus taking care of other family needs, with us living in Mathare slums.

To my disappointment, when in my secondary school at sixteen years of age, I started having frequent nose bleeding episodes which would take like two or three hours without stopping. One day, while in boarding secondary school, I had one of these serious episodes and the teachers could not manage because I lost a lot of blood, and fainted. They took me to the nearest district hospital which was called machakos where they did for me some transfusions and said they did not know what the problem was. They referred me to the national hospital called Kenyatta where I stayed for two weeks, where I was confirmed to have von Willebrand disease (vWD).

Something our family members or friends were not familiar with, in fact friends were only thinking and talking about sickle cell. But, for our family after the doctor explained to us about it's hereditary factors and how it occurs, they understood, because my father had blood clotting problems when he was wounded, even to the point of blood transfusions. I was tested then and proven to have the same vWD as my father.

Since then, I have been living a life of trying to keep appointments and check up every month but with less nose bleeding episodes, because I know how to manage myself. But one fine morning all was well when my mum was admitted with my small brother at the Kenyatta National Hospital because of hemophilia where she got a friend Maureen who introduced her to Jose Memorial Haemophilia Society of Kenya. We became members, met friends there who are also living with the same condition, whom we could share with. The Society also has helped us to get blood factor concentrates whenever in need, especially for my brother who gets the episodes nearly every month and has to be admitted, since we can't afford with my dad the provider, getting a salary of at least 10 dollars per day. At least we can be happy that the Society helps us a lot to cope with our medical condition. Through the Society, we later met Laureen Kelly at a hemophilia day dinner who even helped us with Save One Life funds.

The challenges I live with are men claiming they cannot marry me because I will keep on being sick, and friends (who are medics) always talking about my condition, even at my workplace.

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Most inspirational writing describing a young woman who has lived in poverty, has experienced having inconsiderate friends, but nonetheless has developed her inner strength

Moline brings into our view her memory of being a young girl, living in poverty, and how hard she had to fight the seeming insurmountable situations awaiting her. She became enlightened once she was diagnosed with vWD, the same bleeding disorder as her father. She has developed a hopeful philosophy after meeting others with hemophilia through the Jose Memorial Haemophilia Society of Kenya. Even so, she struggles to make a life for herself in an environment where some people do not provide comfort to her, instead, they choose to separate themselves from her.