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FAMILIA E HEMOFILIA : ALGUMAS PALAVRAS FALADAS

F like Family : ” group of people that are linked together by blood and or/ by feelings of belonging and interdependence”

What is the importance of FAMILY in Hemophilia? well I believe, a family with one or more sons with hemophilia has to know that interdependence and  freedom are 2 important issues to reach. These are kind of opposites: we depend on each other and we want our space, our individuality to be respected.

More on this subject is in my monograph Psychosocial Care for People with Hemophilia toh-44_psychosocial-care

Here are Some ideas I have noticed  that a  functional and creative family  :
1) Seeks always for SOLUTIONS for the problems that appear.

2) Has several good friends with other kids (it helps) to share time and different programs together

3) All the members know how to explain What is hemophilia, what to do, and whom to call in emergency case

4) Knows that a child with hemophilia will have some restrictions in some areas that another son or daughter won’t have. So hemophilia musn’t always SPREAD all over other siblings and parents. Each one of the members can have his TIME  and SPACE to do his activities.

5) The family knows that conflicts and different feelings will naturally arouse because of the differences and will allow them to be expressed without blaming anyone for feeling them. Exemple: a sibling might feel jealous of the atention that his brother with hemophilia receives, and at the same time he might feel guilty to not have a health issue to care about.

The boy with hemophilia can feel bad and with low self esteem because he can’t participate in body contact sports  like his brother or sister does…or he can feel he is not handsome because he has a joint that is swollen. Envy will arise and must be understood as a first step to reach a dream or find another one more suitable to his real possibilities. There aren’t good or bad feelings…there are ACTIONS and consequences…

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 www.blood4.wordpress.com 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...:)

One response »

  1. Peppe says:

    Parabéns pelo Blog… gostei!!!!

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