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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…

Posted by on November 10, 2008 in hemophilia and tagged , .

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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 am back with news! life continues with its adventures... I´ve travelled a lot, lived in many countries. Brazil is my seventh country and i live in Sao Paulo for 32 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, 2026 updated version where I added new topics like Inhibitors and novel treatments, physiotherapy and a some playful activities like video games! 2) HERO (Hemophilia Experiences Results and Opportunities) sponsored by Novo Nordisk since 2009-2014 Done !exploring through qualitative and quantitative analysis the psychosocial issues involving People with hemophilia, their carers and the health professionals in the treatment process. 2) P-TET (Pediatric Thrombosis Educational Tool) , 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) Done: systematic review for the Cochrane Collaboration :"psychological interventions for people with hemophilia and their families" 5) Actually I counsel people who wants to perform as competition level athlete and collaborate with them seeking wellness and goals On a more personal level I have 3 three great not anymore children :) Danaê 35, Rubi 29 and Iggy 27 and i am since 2019 a pole sport athlete at a national and international level. I love it! also To walk and look for shells on a beach and discovering deserts...:)

One response »

  1. Peppe's avatar Peppe says:
    October 28, 2008 at 12:36 am

    Parabéns pelo Blog… gostei!!!!

    Reply

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