Manual del HEMOAÇÃO para o Brasil/ Hemoaction´s manual in English

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HEMOACTION´S MANUAL

 

 

 

 

 

 

 

 

RELIGIOSIDADE SPIRITUALITY

Help me God to see the goodness, to continue my life with joy and simplicity.

Thank you for showing yourself in so many ways, and in so many different rituals around the nations…

Islam has taught me to be humble in the way we may pray and prepare ourself for this,

Camdomble have taught me multiplicity of your manifestations, and music to honour You.

Buddhism taught me the pleasant side of discipline through meditation and contemplation.

Judaism showed me the force and beauty of unity

Christianism, the importance of symbolisms and rituals to connect with the things I can’t understand neither control…

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Rezo para ter bondade no coração, idéias construtivas e tolerância com as diferenças.

Agradeço ter conhecido várias religiões:

ao Islã que me ensinou a ter humildade na postura reverencial ao Deus,

ao Cristianismo pelo seus símbolos belos e seus rituais que adentram a questão do que é misterioso e do que foge a racionalidade,

ao Cambomblé agradeço a vivência da multiplicidade nas manifestações do Divino,

agradeço ao Judaismo o ensinamento da força que emana da união.

G like GREEN / G como GOTA DE SANGUE

G like GREEN :

” one of the colour between blue and yellow in the spectrum; of the colour of trees, growing grass and most plants.

- fresh,

- envious,

- immature, inexperient “

Green because inexperient, green of envy, situations that any human being can live and feel bad about them! IT musn’t BE that way. Envy , if correctly understood, can be a a feeling that gives us the motivation and the energy to make some of our dream come true! Something provoques our ENVY, our liver reacts secreting a bigger amount of bile = that’s why we get GREEn! but we can transform envy in admiration and action !

Experience, maturity: Learn, each day a little bit more…stay curious about your body functions, your mind, your bleedings, your laughs, your friends….LIVE

G como GOTA DE SANGUE:” pingo de qualquer líquido” e

sangue: ” líquido normalmente vermelho que corre pelas veias e artérias, formado de plasma, glóbulos vermelhos e brancos, e que serve à nutrição e purificação do organismo”

Aqui dentro de uma gota pode ter 5 milhões de hemácias ou glóbulos vermelhos!

Más não se assuste nosso corpo é capaz de gerar rápidamente muito muito sangue novo com todas suas células: glóbulos brancos, plaquetas, hemácias, fatores da coagulação (são mais de 12) e outras substâncias.

Saiba somente que se você tem hemofilia A; falta o fator da cogulação número 8 e se tiver hemofilia B, falta o fator número….? 9.

Preparando o ninho/preparing the nest / petit à petit l´oiseau fait son nid/

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Este pássaro macho se dedica a preparar o ninho para que a fêmea goste dele para acasalar!! :)Podemos aprender muito observando o reino animal;

Quando converso na clìnica com os adolescentes e adultos no hospital, oS temaS NAMORO, RELACIONAMENTOS, CASAMENTOS, ETC…SEMPRE VÊM E APARECEM.

Um relacionamento  QUE se prepara com uma base FORTE  TEM MAIS CHANCES DE CONTINUAR  RICO E ANIMADO ! por que sabemos que a idéia nao é seguir ou estar numa relaçao para somente estar…

O que faz uma base forte?? algumas idéias:

1. O homem que tem hemofilia deve transmitir segurança em relaçao ao seu tratamento, ao seu tipo de dificuldade, e se sentir a vontade para demonstrar  CARINHO, APOIO E FORÇA MORAL  a sua parceira. Sabe pedir ajuda más também sabe doar.

É como o pássaro que fabrica O NINHO feito com galhos escolhidos e de boa qualidade!

2. A boa comunicaçao entre mulher e homem é fundamental: Ou seja querer conhecer de verdade quem está ao seu lado!

3. Divertirse e rir bastante! o bom humor, ajuda a aceitar melhor as dificuldades da vida.

DIGAMOS ADEUS PARA VELHOS HÁBITOS CHATOS E QUE VENHAM NOVIDADES! FELIZ  RESURREIÇAO!

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Cet oiseau si beau choisi une a une les branches qui seront la base du nid. Un nid qui devra convaincre la femelle de le prendre pour  partenaire et papa de ses petits oisillons.! Nous pouvons apprendre pas mal en observant le regne animal

Un des themes qui est tres frequent c´est la  relation d´amour: petits amis, mariage, flirts …

pour ceux qui veulent re-nouveler leurs voeux, ou pour ceux qui veulent conquérir ou pour ceux qui veulent maintenir une relation VIVE ET CREATIVE, il faudrait penser à quelques idées:

1. un jeune homme  devra transmettre sureté quand il parle de son hémophilie, il sait comment l´expliquer simplement (”je suis né avec un manque d´une protéine de la coagulation qui fait que je prenne beaucoup de temps pour coaguler et ça peut etre dangereux ou nocif pour mes articulations si je ne me soigne pas vite”)“donc prendre le Facteur 8 ou IX est très important pour accélerer la coagulation“       card-18.jpg

2. Apprendre a se communiquer est une autre bonne idée; je veux dire par la, être dispo de vouloir connaître réellement les désirs et intêrets de sa partenaire.

3. Ah! l ´humour c´est tout de BON! pouvoir rire de soi- même et des bêtises que l ´ont fait ::: ça aide beaucoup a vivre plus heureux.

ADIEU AUX VIEILLES HABITUDES ! JOYEUSE RÉSURRECTION POUR NOS QUALITÉES DES FOIS OUBLIÉES!

I learn about hemophilia, my brother has it./ Aprendo sobre hemofilia porque meu irmao tem

She is the older sister and she is cute! she wanted to be part of her brother and little friends (remember little ones 1 and 2?) group, because she wants to help him and play with him in a safe way.

Damaris é a irma mais velha e ela é muito fofa! ela quis fazer parte do grupo de seu irmazinho (lembram do Grupo dos pequenos 1 e 2)? Ela quis aprender  junto para poder ajudá-lo a conhecer melhor a hemofilia e a brincar de uma maneira mais legal.

The flash cards HEMOACTION : HEMOPHILIA WITH PICTURES

manual_eng.pdf

AND 10 MORE CARDS TO PLAY AND LEARN ABOUT HEMOPHILIA, BLOOD CLOTTING, SPORT ACTIVITIES AND SYMBOLS .

I serve the psyche…so for me, Quality of life concept means….

Quality of life….I am in contact with the hemophilia community for more than 15 years and if I am not wrong the concept of quality of life is new for PWH and their families.

I like the term but I don’t agree about how it is used: let explain my point of view: it seems that the priority is to have Factor for everybody and as prophylaxis. It would be marvellous I totally agree. It would prevent so much hemartroses and would make some severe hemophiliacs becoming moderate or mild…almost asymptomatics….(without symptoms of hemorrhages ) but what I SEE , what I have to live with is another reality.

It is the DAY TO DAY reality of a patient who has to DO A LOT WITH FEW ressources. Material ressources such as home therapy, or prophylaxis isn’t a reality for most countries in the world. I agree too that efforts must continue to reach that dream.

But as the title says I am a server of the psyche, a psychotherapist, and as one I am used to work with what I receive and stick to that to transform things. These things are inner aspects of personality, it is a process of transformation.

For example, imagine how would you BE with a family who knows that in other countries, Factor is available as prophylaxis ? what feelings arise? envy, rage, anger, lack of motivation….or other feelings and attitude: let see what my center offers? what is hemophilia IN ME? what can I do in my way of seing things and change to improve my quality of life?

Because what I believe is that if we spend time just looking outside of ourselves, and pity our conditions…we lose time and the oportunity to have GOOD IDEAS. Good ideas come when we realize what is missing in our way of doing things, and when we change our mind.

quality of life is a matter of HOW we see things that happen to us:

in a flexible way. We can change our ideas, we can change our mind about the way we use to think of hemophilia, being sick, troubled, in rehabilitation, in love… but OUR BIG EGO don’t like to change its mind!! that usually makes him feel “unstable, incoherent, irresponsible….etc etc” good excuses to blame always the others for what we are, for what is happening to us.

I have seen men and women with hemophilia that depressed, but have seen through their depression and have understand new things, new ways of living. Quality of life is also an attitude where the patient is not always a patient, as he sees that he is more than a person who has hemorrhages…he is a son, a friend, a active member of his surrounding even if he can;t move! he is a person who can make friends, can be helpful as help people sometimes.

Quality of life is not only about material aspects but also about psychological. To do psychology is to have a deeper look on events. And in that way events transform themselves into “experiences” .(James Hillman in his book Re-visioning Psychology explains that beautifully)

A like Prevention it seems easier right: at the center we work with the little ones and prepare them with early self-infusion, or they learn about hemophilia with flash cards, playing, drawing. They learn how to take care of themselves early.

But I work also with people that are teenagers and adults and I find it easier, because in psychotherapy or counselling, they discover that they can choose if they want to be a victim or not. And believe me, there is happiness and good experiences in their lives.

Don’t be afraid! Não tenha mêdo! No tengas miedo! N’ aies pas peur!

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At your centre of hemophilia, we will help you to understand why is important to take your infusion of Factor.

No centro de hemofilia, a equipe te ajudará a entender porque é importante que você tome o seu fator.

En el centro de hemofilia, el equipo te ayudará a entender el porque de tomar el factor.

Au centre nous t ‘aiderons a comprendrer pourquoi c’ est important que tu prennes ton facteur.

After the Pain, life always returns/ “Depois da dor sempre vem a vida”

This drawing was made by a teenager with severe hemophilia A, when asked to express what he felt about his hemophilia. He expressed a common sensation:
Pain, felt from several hemarthroses he endured.Pain was  a sensation he had to face repeatedly.

The tree with red fruits, which also seem to be drops of blood,represent his hope. Because although it is  blood it is a tree with life in it. The Pain is illustrated by the black, dry and empty tree.depois-da-dor.jpg

Psychologist Irene Fuchs In Buenos Aires Argentina(http://www.hemofiliarte.com.ar) has a wonderful work with relaxation techniques. Relaxing is a state of mind, spirit and body that can be learned. And when a person relaxes, pain can be dealt with and lived in a different perspective.
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Este desenho foi feito por um jovem com hemofilia A grave, quando expressou seus sentimentos a respeito da hemofilia.
Dor, foi a sensação mais difícil para encarar depois de inúmeras hemartroses. A esperança de poder lidar com a dor de uma maneira mais legal aparece no desenho da árvores com frutas, que também parecem gotas de sangue. Más a Dor é vivida como seca, nua. Uma árvore preta e sem vida.

A psicóloga Irene Fuchs em Buenos Aires, (www.hemofiliarte.com.ar) tem realizado um trabalho maravilhoso com técnicas de relaxamentos nos pacientes com hemofilia. Relaxarse é um estado de espirito, de corpo que pode se alcançar com a prática.
Focar en sí mesmo, na sua propria capacidade de encarar a dor e de lidar com ela proporciona uma sensação real de independência.

Poem for TURTLE

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YOU DO YOUR BEST
YOU DON’T REST
TICKLE TICKLE !
ALLRIGHT
FACTOR IS WHAT YOU’LL GET card-18.jpg
FOR A PERFECT FIBRIN NET !