D like Discovering : ” find or learn about (a place, a fact ….) for the first time”

what can be done when a child discovers that  he has a lot of bruises (his difference comparing to other kids) OR that he is CONSCIOUS that when he bleeds (because it is blood that he sees, or because he feels his ankle swollen for exemple..) he has to take his first infusion of factor 8 or 9?  How  to  explain?

First: Explain showing images and tell him that his blood is slower in one thing : In STOPPING a bleeding like a turtle .!

if he is older than 6 years old,  he can start understanding a Process like a vein that is leaking and cells that have to stop the bleed;  first come  the PLATELETS

acting as a plug,

and then the fibrin net that needs factor infusion to get STRONG

and stop the bleeding quicker


D como Desafio : ” ??? o que é um desafio para uma pessoa com hemofilia??” para mim desafio é aquilo que te convida a tentar  realizar!

Do Dicionário Etimológico de Da Cunha: ” DES-AFIO  vem da palavra fidare em Latim que significa ‘confiar’! Por tanto desafio significa “não des-confiar, não receiar!!!!”

Alguns dos pacientes quando foram perguntados na minha salinha do ambulatório, responderam:

-desafio é levar uma vida normal

-é poder achar a veia e infundir o fator corretamente

-não machucar sério

-ir para faculdade ou ganhar sua independência financeira

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...:)

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