“He is not a real hemophiliac”! ? “Ele não é um verdadeiro hemofílico!”

Durante o acantonamento Alexandre, que tem hemofilia A leve (mais de 5% de fator VIII no sangue) foi uma novidade para o resto dos jovens que tinham hemofilia  grave. Eles ríam e ficavam brincando  que Alexandre “era falsificado, do Paraguai!!”   porque não sangrava tanto quanto eles durante o ano!

Todos foram aprendendo a conhecer mais sobre as DIFERENÇAS DENTRO DE UMA MESMA DISFUNÇÃO DA COAGULAÇÃO… E AO FINAL DOS 2 DIAS NINGUÉM SE MACHUCOU, NINGUEM PASSOU MAL! AO CONTRÁRIO SE DIVERTIRAM MUITO. Alexandre and Vik my dear collegue social worker

In that beautiful place, differences appeared when the other fellows with all severe Hemophilia discovered that Alexandre was a mild  hemophiliac. They teased him and called him false -hemophiliac (everything with good humour and fun of course), and with a little bit of envy because he didn´t bleed as much as them during the year…

It was a good opportunity to learn about DIFFERENCES IN A SAME DISORDER. And at the end of the camp, everybody , mild and severe, could enjoy the stay without getting hurt or having a serious bleed. Only Wgner, 13, had to take factor 8 to prevent a start of heat and swolleness in an elbow.

A young man’s story / Reencontrando Maurício :)

MAURICIO FALA DE SEU MOMENTO

CLICKA NO “Maurício” e depois no “ouvir” do Gengibre blood4!

With Gengibre I  could record some of Maurício’s news: He is 20 years old and he was so excited to tell me that he had a job, that he was not very satisfied and looking for a better one, not that close of home but with better conditions. Although he had had more bleedings lately he was concerned about his independence and about starting again his physiotherapy.

What pleased me so much is that he was so confident, so glad of improving his life…I know him since he was

6 !

Sobre a Dor… conversando com adolescentes e adultos/About Pain: some tips from young men´s stories

Atualmente, a Dor é capaz de ser pelo menos colocada “numa escala de 1 a 10″….de nenhuma dor (0) a insuportável (10!)
Más os meninos que têm hoje 15 anos ..não enfrentam (que bom por um lado) as dores crônicas que os veteranos na hemofilia, os da década de 50 e 60, enfrentam.
Diferenças devidas ás melhoras no tratamento e nas condições de rehabilitação pós-hemorrágicas através da fisioterapia!

www.partnersagainstpain.com HERE IS AN INTERESTING SITE ABOUT PAIN

and as a +, I have gathered some common attitudes between the young men with hemophilia:

These are their TIPS TO COPE WITH PAIN :

1. As pain is a sign, paying attention as quick as possible is very important (start with cooling the area, consulting, taking the first shot of factor.., resting the member affected)

2. If it continues , don´t pay attention to the sensation of Pain, don´t “feed” it with lamentations, curses and hatred

3. Breath deeply, it seems so much cliché, but it really works! and think about good things, remember funny stuff, converse with friends to change the focus. Play videogames (the ones you are good at!!! don´t increase the stress)

Eis as dicas dadas por aqueles que sentem DOR crõnica ou aguda (devido a um sangramento):

1. a dor é um sinal: tome as providências rapidamente (gelo, fator, repouso, consulta….)
2. depois das providências, NÃO dê “bola” a dor, não “ALIMENTE” a dor pensando nela, se queixando dela, odiando- a!
3. Respire e escolhe fazer OUTRA COISA (jogar um video game, contar ou conversar, lembrar coisas divertidas…)

Before I left…on a Thursday at the hemophilia center…/ Antes da viagem um encontro entre adulto e adolescentes

You have seen these boys before…but the one in the middle is our guest! he is like me, in his early 40’s (mature ,….and he came for the second time to attend the adolescent group to share his experiences: !

How  Plinio was living without factor 9 back  in the 60s, the stories at school, later his will to learn several martial arts, his desire to practise physiotherapy and his love story with Ana.

All that and more told with a lot of good humour (we laughed a lot together)!

PELA SEGUNDA VEZ , NOSSO AMIGO PLINIO VEIO PARTICIPAR DO GRUPO DE ADOLESCENTES PARA CONVERSAR COM ELES SOBRE DIFERENTES TEMAS: começando pela sua própria historia nos anos 60 quando criança numa época sem fator 9, sua infância e adolescência….suas aventuras e descobertas como portador de hemofilia, cómo lidar com as limitações e propulsar suas capacidades: ele é muito bom em aprender e ensinar. AQUI ELE ESTA ENTRE EDSON DE 15 ANOS estudante e de BREENDON 14 ESTUDANTE E PRATICANTE DE NATAÇÃO (faz 2 semanas! )

Plinio nas áreas de artes marciais, filosofia oriental com sua meditação e prática da ioga.

Enfim, claro que não faltaram as boas risadas..porque quem o conhece sabe que suas histórias são hilárias!!

e os meninos ADORARAM!