Rietha Brun

Rietha Brun

France

I have always been covered with ugly bruises. Always thought is was normal, until I had my first periods. They lasted sometimes up to 2 weeks and were very bad. I would have to leave the classroom every 20 Minutes to get changed etc. My family never seemed worried about that. After the birth of my 3 child (I had very bad blood lose each time) my eldest daughter had to be operated. I was already 36 years old. They asked a blood test to check her blood clotting…. The dicter refuses to operate her saying that she suffered from a form of hemophilia. We were immediately sent to a specialist who announced that one of her parents must have a blood disorder and that we had to be tested immediately. The day after the test, they announced my hemophilia to me over the phone. I have the Von Willebrandt disorder. This means that I do not have enough “glue” to help my blood clot or to keep the clotting in place. It also means that my Factor 8 is only 26 which means that I am part of the 6% french women with this blood disorder. It turns out that my grandfather, my mother and sister are also bleeders (in a lesser degree than myself) They just never spoke about it or worried about it. My life has changed. I now do not think of myself as different. I think of myself as a 6 in a million person. I know my limits and what to do when bleeding. I had to train my family and explain to my friends what to do when one of my children is cut or bleeding and also my work colleagues. The only sad thing is that many french docters and private cliniques have refused me for operations etc seeing that they do not want to take any risks (insurance for if I bleed or die during an operation)! Other medical staff (pharmacists, dentists, nurses and some d’octets) are not familiar with women having blood disorders. They only hear if this somewhere during their studies but are not often confronted with it. It is great that you are dedicating this year to us the women. We need to inform the world that we too can suffer from disorders and that we are not just sissies and pretending.

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Rietha Brun

France

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