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CLIQUE em “familia e hemofilia” para me ouvir! nova maneira de compartilhar idéias
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…
Hi everyone ,
i am obay , and these days i am studying.
my first exams approaching and i am busy.
About ( my hemophilia ) i am used to it. i live my day normally as any person, university ,,friends ,, and every normal thing.
When i got a bleed in a knee or anywhere, i go to hospital Immediately and take my treatment .
Ok , thats all today.
thank you all
================TRADUÇÃO AO PORTUGUÊS
Oi para todos!
Sou Obay, e esses dias estou estudando . Minhas primeiras provas estão chegando, estou estudando e muito ocupado.
Sobre (minha hemofilia) estou acostumado a ela. Vivo como qualquer jovem, vou a faculdade, “amigos’ e todo o que normalmente rola.
Quando tenho uma hemorragia no joelho ou outro lugar, vou para o hospital imediatamente para receber o tratamento.
Ok, isso é todo para hoje
Obrigado a todos!
Obay
November 2, 2008
Drawing our dreams or living our dreams (2) / Desenhando o que sonhamos e vivendo (2 parte)
In 1991 I started to draw some of my dreams while I was undertaking my first Junguian Analysis. This one is called “PEZ RUBI” = Ruby Fish (obvious…but not obvious…because in my dream a man gave me a ruby ring which transformed in front of my eyes into a fish: a fish in a finger!!!
this experience, this dream was pleasant. (click on the fish)
In 1996 was born my second daughter and we called her …….RUBI
Em 1991, durante minha primeira análise Junguiana, comecei a desenhar com muito amor meus sonhos! este aqui o chamei “Pez Rubí” em Espanhol ja que morava em Montevideu. Obviamente, parece que é somente porque é vermelho …não é? más no meu sonho um homem me presenteava com um anel de rubi que, para minha surpresa, se transformava no meu dedo …num peixe vermelho!!! um peixe no dedo! 🙂
O sonho foi catalogado por mim como muito prazeroso e cheio de graça. Em 1996, nascia minha segunda filha..e adivinham qual foi o nome que escolhimos??? RUBI
October 28, 2008
familia-famille-family-aaélah-……. (click beside Gengibre and listen to a talking post)
Hemofilia ou não numa familia…o importante é viver a vontade de AMAR, de fazer o melhor como mãe ou como pai. As dificuldades aparecerão más os momentos deliciosos também!Aqui umas reflexões e um pequeno poema em francês, minha lingua materna. Homenagem a vocês meus pais queridos e velhinhos….
(click here it’s a TALKING Poême pour chaque bébé clique no Poême , falo contigo
A family with or without a bleeding disorder…it really doesn’t matter, if we think of motherhood and fatherhood as an endless process of learning about ourselves, a path with difficult moments but for sure….marvellous moments too.
Being close to our kids and watching their development happening in front of our eyes, revealing their unique mark is something overwhelming.
Here a little poem in my mother tongue french a way to thank my parents… I love you!
OBAY ABUKWAIK participated in the youth camp in Amman. I asked him to be my correspondant , a bridge between myself and the other members of the workshop! He is 19 years old, he studies Biotechnology and Genetic Engeneering….he is very much involved in all what has to do with improvement in treatment for hemophilia in general. He has moderate hemophilia B himself.
He likes swimming and watching TV. His dream is to have factor IX at home for a quick treatment and consequently more spare time to do other activities! 🙂
OBAY tem hemofilia B moderada e ele aceitou ser meu correspondente com o que acontece com os outros rapazes do workshop em que participei em Agosto em Amman.
Ele fala e escreve bem em Inglês , estuda Biotecnologia e Engenharía Genética. Ele anseia por progressos na área do tratamento para hemofilia. Ele gostaria de ter fator em casa para poder administrar quando necessário.
No grupo com os adolescentes brincamos de fazer muitas coisas diferentes como imitar SONS, soltar as idéias, brincar de fazer de conta (que, por exemplo, um menino está conhecendo uma menina, ou tentando sair de uma situação de conflito) e de brincar de carinha ao contrário! é legal : desenhem 2 olhinhos com o marcador e vire ao contrário, façam perguntas à carinha e vejam o quanto é fofo! 
Doing little dramatizations in the group therapy is very helpful to laugh and then realize how difficult it is sometimes to express ourselves… I incentive to make Sounds, to imitate people, or simulate situations that happened to them or might happen …like dating, solving conflicts with peers or members of the family.
Another thing we did, and it was funny was to draw 2 little eyes with a marker on Kaio’s chin and upside down ask him some questions! what an interview!! 🙂
HEROES ALSO BLEED….AND TAKE TIME TO HEAL: The encouter between Prometheus and Kheiron
about a telling story technique used to deal with issues such as COURAGE, DIFFERENT KIND OF challenges, heroics actions, consequences, responsability, self esteem and a lot of others interesting topics…
Greek mythology is very rich in fantastic situations! This story is about OPPOSITES too: good/bad, immortal/mortal, wise/fool, youth/aging….
These drawings were made by the teens after I told them the story of PROMETHEUS and KHEIRON the Centaur.
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
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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
Fotografei esta figura num aquário de Tóquio…ele é Japonês mesmo! 🙂
I took this picture in July in Tokyo´s aquarium…this fish is absolutely funny and friendly, he even smiled at me!!!
HEART,2004. Rubber, stainless steel, metal, thread, plastic, wood and cardboard….
All the elements together made by a woman of 93 years old. A great artist…our heart, this organ symbol of generosity, love, passion, goodness and also where dark feelings can hide, can torment, can destroy.
Destroy to rebuilt, to transform…..built to live a better life with ourselves and our surroundings made of people, animals, nature.
“Coração” da artista Louise Bourgeois que, em 2004, com 93 anos faz essa leitura do órgão mais famoso do corpo.
A alusão as bobinas de fios é para homenagear a infância passada com tapiçarías Aubusson…é como se o coração da gente fosse algo que permanentemente é reciclado, costurado porque é flechado na paixão, nas emoções fortes ou porque foi ferido.
O coração é de borracha também porque podem caber nele MUITAS PESSOAS de maneiras diferentes…
O coração é uma máquina que tem que ser cuidada.
September 22, 2008
Hemoaction flashcards… soon a continuation for 2010! Hemoação terá uma continuação ! que alegria *
I am working with Marco Pavão (artist) and Dr Lucíola (physiotherapist at the CHESP) to make a sequence to the flashcards with the topic: Physio!!! surprise is surprise…but you now KNOW! 🙂
BLOOD 4 