Hemoaction first on line game at the WFH website :) GO and Play.. O Hemoação está no site para brincar!

QUE ALEGRIA VER AS CARTAS DO HEMOAÇÃO VIRAR O PRIMEIRO JOGO ON-LINE  NA FEDERAÇÃO MUNDIAL DE HEMOFILIA :)

Acesse e aprenda brincando….AGORA ESTA EM ESPANHOL TAMBEM!

I HOPE YOU ENJOY HEMOACTION GAMES! NOW IN SPANISH TOO!  GO TO http://www.hemoaction.org/


Agressividade nas crianças…e na hemofilia?/Agressiveness in children…what about hemophilia?

fotos-vida-selvagem-002Acho esta imagem muito poderosa: os felinos atacam sem piedade porque faz parte do ciclo da vida, morte e sobrevivência.

Nós humanos e os pequenos humanos temos um lado agressivo também, não tanto como os felinos ! más , quantas vezes vemos os meninos brincarem de video games nas lutas e matanças virtuais, nas aventuras perigosas que eles tramam no seus computadores e jogos eletrõnicos.

Faz parte deixar as crianças extravasarem seu lado agressivo nos jogos. E, quando se trata de um menino com hemofilia, tem que fornecer esta oportunidade de :

– expressar verbalmente a raiva que ele sente as vezes

-ensinar a maneira socialmente aceita de resolver conflitos, sem ter que brigar com as mãos e os pés!

– permitir que ele jogue porque na FANTASIA ele é TUDO QUE ELE precisa ser.

E porque na vida de todos os dias, ele não poderá jogar por exemplo partidas de futebol, rugby ou karatê. Então, a busca de um equilíbrio é necessário para um bom desenvolvimento de sua personalidade como um TODO.

FANTASY AND IMAGINATION help the child with severe hemophilia or with some physical limitation, to compensate in a healthy way his need to express his agressive side. In general, boys adore video games and movies where blood, fights and physical combat skills are happening.

Agressiveness is part of our wild and savage side and it doesn´t have always to do with hostile feelings. It has to do with a natural energy that requires attention.

We can´t repress it all the time: that´s why sportive activities are important for all kids. But when we deal with hemophilia, we notice that we have to find substitutes and find alternative sport activities that are adequate to each child situation.

At the end every kid must have fun and learn to manage his anger, or excitability in order to be a socially creative and adapted being .

 

SE TODAS AS GUERRAS FOSSEM ASSIM… if only wars were just like that….

I WOULD LIKE TO BE PART OF THAT!! ADORARIA FAZER ESTA GUERRA DOS TOMATES ! tomatina-001.jpg

Guerra dos tomates maduros em Bunol-Valença em Espanha. Que melecagem..deve ser divertido.tomatina-001.jpg

TOMATOES WAR in Bunol-Valencia, Spain. It looks like a battle field..only that this one looks really funny!

SOCORRO ou DIRIGINDO O PRÓPRIO BARCO? / S.O.S or Driving our own “boat”

 SOCORRO!  ou Dirigindo o próprio barco?

O que ajuda a se sentir mais confiante?

1. Saber explicar o que é hemofilia de uma maneira simples: ” quando eu me machuco e sangro, demoro mais tempo para parar de sangrar …e isso pode ser ruim para mim se eu não tomar o remédio rapidamente”

2. Aprender a fazer os exercícios físicos adequados para fortalecer e cuidar dos músculos e articulações do corpo. (Baixe federacao_brasileira_de_hemofilia_manual_miolo)

3. Não deixar de se instruir : na escola, colégio, ler livros interessantes, ver filmes inspiradores, visitar museus, conversar com amigos legais…….

S.O.S  or  Driving with confidence ??

Of course here I mean Driving in a metaphorical sense: be as autonomous as possible

by 1) like I always say try and practise a lot to explain hemophilia, a joint that is swollen, or the reason you are limping, in the most natural and clear way: the more natural you sound explaining even saying for example that you dont’ feel at ease with the fact that you have a target joint, or that you have to miss school sometimes, or just say“that you take more time than other people to clot properly… because something is missing in your blood.…. (I am repeating myself but i really believe in that)

2) Do and redo the physiotherapist exercises! your muscles have to be taking care off, as well as your joints…and only exercises done often can give good results and prevent more bleedings.

3) Inspire yourself with interesting READINGS, good movies, funny friends! music and art are the “guarantee for sanity” a great artist said (Louise Bourgeois)

Another form of art by Koons / Cachorrinho gigante do Jeff Koons

picture-4

Parece que foi uma crítica /manifestação contra a onda do consumismo /negócios em torno dos nossos animais de estimação ou uma celebração e homenagem ? …… o que acham?

Too much?  A way to show the  absurdity  of  the whole marketing / consumers around  puppies or a celebration of our love for our pets?….what do you think of Koons’ work?

The villains that can help / O vilões que podem ajudar…

Meet  Misters. Pain ! here few of our bad guys in Hemophilia Land. But “Pain” can help you, because if you feel it is probably a  sign alerting you that something is not going well in your body…an internal bleeding, inflammation ??

check it out AS QUICK AS YOU CAN with your parents, doctor or  your hemophilia center. Pain

Apresentando o Senhores. Dor! ele são os nossos vilões no Mundo Hemofilia. Mas a DOR É UM DOS SINAIS DE QUE ALGO NÃO ESTÁ  BEM NO TEU CORPO:  ha hemorragia, sangrando por dentro? tem que tomar uma atitude (fator, fisioterapia, ligar para teu médico ou ir para o ambulatório de hemofilia)

What do you do when you are in pain? tell us ! report to your parents…

O qué você faz para diminuir a dor de um sangramento?? conte! :)

V like Vein / V como viagem

V like vein : ” One of the type of tubes carrying blood from all parts of the body to the heart….”

Finding  veins to puncture is very important : when babies, we know how difficult it is to find one able to receive the factor, we watch a baby suffering because his veins punctured several times. It is important to STOP trying if the vein isn’t appearing.

As a parent you can also ask for another nurse to try, or to wait to calm your baby and yourself again. This moment requires calmness and dedication to succeed. From everybody : from the parents, kid and from the staff involved.

The team comforts him and his family, try to be as assertive as it can to find the vein.

And sometimes the best solution in early year is to put a cateter (port-a-cath) facilitating this way the prophylaxis treatment (infusion of factor several times a week).

As years pass the vein and the patient are partners…little kids ages 4,sometimes almost 4… at our center are trained by Eliane Sandoval our Chief nurse to self-infuse that early! Ana and Nijane the other nurses in the team are part of the project too. Our center work for an early self-management; it is a challenge.

V como viagem :” do latim viaticum que significa provisões para ir longe….ato de ir de um a outro lugar relativamente afastados…”

Nos congressos de hemofilia sempre encontro cada vez mais pais, jovens e não tão jovens portadores da disfunção, que aproveitam a ocasião para participar ativamente, assistindo e dando aos palestrantes seus pareceres.

Isto me motiva a buscar e a caprichar na escolha das palavras para explicar o que eu quero dizer de uma maneira simples e me colocando nos seus lugares. Se eu tivesse um filho com hemofilia eu gostaría de ouvir coisas claras , idéias para lidar melhor com a disfunção e material didático e psicológico para facilitar a aprendizagem. Gostaria de “viajar” em sugestões e projetos que deram certo em outros centros, procuraría inspirações….

Agora sabemos que , quem tem hemofilia, pode viajar, carregando suas doses de fator consigo, ficando assim independente e responsável. Boa viagem!

Presentation at the Nurse Meeting , Kyoto 2011

 

A new important project : living, learning and then sharing / Meu primeiro título registrado na valiosa Cochrane Collaboration

I am very happy and challenged to be authoring along with honorable colleagues (A. Iorio, F. Emiliani, L. Palareti, J. Pasi)  the title “Psychological therapies for people with hemophilia and their families” for Cochrane Reviews….it is time to believe that psychotherapies or other psychological interventions made  for people with hemophilia with or without inhibitors , with or without other co-morbidities, can give useful information for all.

With the results of this research, our colleagues could be  motivated  to undertake new projects and make the best choice in their field.

I know by experience that lots of my colleagues as myself have done useful and remarkable interventions during the years. And now, we can also use that experience to take part in creating clinical trials. I BELIEVE we CAN.

More that applying questionnaires…we can intervene with our skills as “servers of the psyche”, servers that can help heal the soul…because the soul’s can ge sick and suffers as well as the body.

Séraphine de Senlis: a self-taught artist

a woman pure soul …she painted singing with a brush, her fingers most of the time, with her own recipes of colors made of exotic ingredients…they say bull blood was one of them. The texture of her paintings were waxy and she is told that she used to sign first and then paint. They say she got crazy, psychosis meant isolation!

Look at this passion, vividness….it seems moving…She was discovered by Wilhem Uhde around 1920 and until her death in 34 in an asylum , he continued to visit her…

Emotional prophylaxis

In countries like ours (Brazil) and most countries of the globe (in Africa, Asia…just to mention continents)…the situation of having Factor a go-go is not a reality! sorry for the term a go-go but it is the truth, a hard one: people with hemophilia can´t rely on having Factor VIII or IX as a prophylaxis.

To be on Prophylaxis means to receive Factor infusion when you are not bleeding yet !( it is called Replacement therapy too) it means that you can elevate the % of factor in your blood and   transform, for a period of time,  your “severe” hemophilia (with less than 1% of factor) to a moderate hemophilia or a mild hemophilia! (more than 5%) .card-17.jpg

Of course this , in terms of day-to-day way of living is a huge difference! kids with the possibility of receiving factor 2-3 times a week  prevent bleedings, can practice more sportive activities…

Ok, but here we don´t have this prophylaxis for all our children yet! Actually some kids receive prophylaxis as a treatment . That´s a big step and a good start..

So, I came with the idea of Emotional prophylaxis!!!

EMOTIONAL Prophylaxis is about : let´s do more with less!meninos-do-centro-e-arte-004

it´s about facing reality and transform it into a better one. How? well,  I never believed that if you have more money, or more clothes , you are happier. It can help though :) if you know how to manage it well …

I mean, people are not only a body or a vein which will receive factor. Who has hemophilia is a person, a student, a son, somebody with dreams, with desires, with limitations and possibilities that have to be considered, elaborated and empowered. A young boy with or without hemophilia will grow, will go to school, will want to work, to date… (and I hope so…because I´ve seen parents who don´t imagine that for their sons). Knowing their hemophilia better, learning how to cope with its characteristics, prepare their personality in a more flexible one. The person with hemophilia will see himself more than just one thing: a man with a physical disability. He will see himself as a Man first.

As a psychotherapist I offer shots of consciousness, care and courage. This is emotional prophylaxis.

H como HUMOR H like Home therapy


H como HUMOR :

” Líquido contido num corpo organizado, umidade”

“boa disposição do espírito, veia cômica…”

NADA COMO O BOM HUMOR !picture-8

É interessante perceber que o Humor tem a ver com o que FLUI, um líquido. Quando estamos de bom humor as tarefas ficam mais leves, as relações interpessoais são gostosas e o ambiente de trabalho fica agradável.

Por mais que esteja sofrendo, com dor física ou moral, lembre de que se ri, se tem humor, as dores não ficam tão fortes. O corpo fica menos TENSO , mais RELAXADO = menos sofrimento.

H like HOME THERAPY :” home=place where one lives and feel comfortable” and “Therapy= any treatment designed to relieve or cure an illness or disability”

Luan receives his factor replacement therapy prepared by his mom. She has the first factor dosis at home to apply if her son has a bleeding. Then she will come to the hospital for evaluation or check up.

A family who has the factor at home feels more comfortable with the treatment and has the tranquility to relieve faster the pain of a bleeding. Also , by infusing quickly the factor, the chances of joint problems are low.

M as Memory / M como Memorizar

M as MEMORY / M como MEMORIZAR

MEMORY :” POWER OF THE MIND BY WHICH FACTS CAN BE REMEMBERED”

MEMORIZAR:” AÇÃO DE LEMBRAR, GRAVAR NA MEMóRIA”

got hurt, still bleeding? get the factor replacement, to accelerate the slowness (turtle) and transform it into a turbo turtle! now you have a firm clot!

Machucou e continua sangrando? toma o fator pela veia, acelera a lentidão da coagulação (tartaruga) e transforma isso numa tartaruga turbinada= coagulação eficiente.

Agora você terá um coágulo firme e forte!

HERO : SOME IMPORTANT RESULTS TO SHARE WITH ALL / Projeto HERO : Importantes resultados para compartilhar!

http://www.novonordisk.com/about_us/improving_haemophilia/research-outline-and-results.asp

Last July in Kyoto the International Advisory Board of HERO initiative and the support and sponsor of Novo Nordisk A/S launched 3 posters explaining the 3 phases of the work. A lot is being done right now in different part of the world….a lot is to be done in different part of the world too! We, Iorio, Queirol, Forsight and Cassis on behalf  of the IAB have the pleasure to present this to you. CLICK and Download :)

 

Julho passado fui para Kioto  no congresso ISTH; lá apresentamos os 3 posters do projeto HERO! Vale a pena o quanto foi feito, o quanto se está neste exato momento realizando em diferentes países e, o quanto ainda está por se fazer! Tudo sempre com seriedade e alegria para  dar o melhor da nossa experiência para a comunidade das pessoas e familias que vivem com hemofilia. Convido a todos a fazer o download no endereço acima!

More of Kyoto…a path / Caminhar nos vermelhos nipônicos

Pictures taken by Leonardo Brandão, pediatric haematologist at Sickkids Hospital Toronto, my friend.