Joana Brauer

Joana Brauer

Brazil

I look forward to the month of April since discovery my first born’s hemophilia. He is the first of the family to have the condition. His diagnosis came about a year after his birth. We noticed he got black and blue marks quite easily. I was not really sure what hemophilia was when the word came out of the doctor’s mouth and although we were shocked to learn he had severe hemophilia (first tests indicate light), we were at ease once we were told that Brazil provided treatment through the national health system. Recently I was asked how it has changed our lives and my immediate answer was that it added an extra 20 minutes to our morning routine whenever we have to factor up. That is the honest truth, with treatment my 4-year-old leads a normal life, he plays, runs, skates, plays basketball, gets scrapes and bruises, black and blue marks, and busted lips, like any other child – in my phone I collect pictures of these remarkable moments. Last year we found out I was the mutated gene carrier and this year, exactly on April Fool’s my youngest (2 months) son also received his diagnosis of hemophilia type A. So, my husband and I are raising two very unique boys. In his words: to have children considered to be “normal” wouldn’t have suited us anyhow. I hope future and present parents will realize early on how important treatment is, and will adhere to it earlier rather than later – one should rejoice at the fact that prophylaxis, even if it comes through needle pokes. can offer children a more complete childhood.

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Joana Brauer

Brazil

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