In countries like ours (Brazil) and most countries of the globe (in Africa, Asia…just to mention continents)…the situation of having Factor a go-go is not a reality! sorry for the term a go-go but it is the truth, a hard one: people with hemophilia can´t rely on having Factor VIII or IX as a prophylaxis.
To be on Prophylaxis means to receive Factor infusion when you are not bleeding yet !( it is called Replacement therapy too) it means that you can elevate the % of factor in your blood and transform, for a period of time, your “severe” hemophilia (with less than 1% of factor) to a moderate hemophilia or a mild hemophilia! (more than 5%) .
Of course this , in terms of day-to-day way of living is a huge difference! kids with the possibility of receiving factor 2-3 times a week prevent bleedings, can practice more sportive activities…
Ok, but here we don´t have this prophylaxis for all our children yet! Actually some kids receive prophylaxis as a treatment . That´s a big step and a good start..
So, I came with the idea of Emotional prophylaxis!!!
EMOTIONAL Prophylaxis is about : let´s do more with less!
it´s about facing reality and transform it into a better one. How? well, I never believed that if you have more money, or more clothes , you are happier. It can help though 🙂 if you know how to manage it well …
I mean, people are not only a body or a vein which will receive factor. Who has hemophilia is a person, a student, a son, somebody with dreams, with desires, with limitations and possibilities that have to be considered, elaborated and empowered. A young boy with or without hemophilia will grow, will go to school, will want to work, to date… (and I hope so…because I´ve seen parents who don´t imagine that for their sons). Knowing their hemophilia better, learning how to cope with its characteristics, prepare their personality in a more flexible one. The person with hemophilia will see himself more than just one thing: a man with a physical disability. He will see himself as a Man first.
As a psychotherapist I offer shots of consciousness, care and courage. This is emotional prophylaxis.