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%) .card-17.jpg

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!meninos-do-centro-e-arte-004

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.

About frederica cassis

My name is Frederica Dillen CASSIS, born of a Belgium mother and an Egyptian father, on the 3rd of January 1966 in Brussels, Belgium. I´ve travelled a lot, lived in many countries. Brazil is my seventh country and i live in Sao Paulo for 19 years now. Graduated in Clinical Psychology in 1991, I specialized in Junguian Psychology and in Hemophilia since then. LATEST PROJECTS: 1) Launching IN-HEMOACTION flash cards, where I added new topics like Inhibitors and their different treatments, physiotherapy and a some playful activities like video games! 2) HERO (Hemophilia Experiences Results and Opportunities) sponsored by Novo Nordisk since 2009, exploring through qualitative and quantitative analysis the psychosocial issues involving People with hemophilia, their carers and the health professionals in the treatment process. check this project in my blog Now, HERO is in Brazil! soon the results will be available. 2) P-TET (Pediatric Thrombosis Educational Tool) flash cards in evolution stage, for kids on anti-coagulant treatment...inspired on IN-HEMOACTION flashcards success. 3) I am a co-author along with psychologist Irene Fuchs and Edward Kuebler of a booklet called "Communication, love and sexuality for people with hemophilia, carriers and family" 4) an on going process of a systematic review for the Cochrane Collaboration about "psychological interventions for people with hemophilia and their families" On a more personal level i have 3 three great not anymore children :) Danaê 24, Rubi 18 and Iggy 15) and i love to jogg, dance and read. To walk and look for shells on a beach too and I discover that i love deserts...:)

2 responses »

  1. Kate H says:

    Kate H…

    wow its great!, …

  2. what a wonderful thought 🙂 we need more pluralists in the world, especially where suffering resides.

    and thank you for the poem. it took my breath away at the end because it wasn’t an end at all but an opening.

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