Archive for the ‘hemophilia’ Category

The importance of dialogue / A importância do diálogo

December 10, 2009

When you get hurt, or feel pain in one of your joints  tell your parent as soon as you can.  In that way you will get better sooner too :) with factor replacement therapy. 

If blood accumulates in joints or internal organs…it weakens you, or damage your bones, organs. Bleeding must be stopped as soon as possible.

Assim que sentir dor ou que machucar, avisa teus pais ou professora…assim você irá melhorar rapidamente. :) Não tenha medo de conversar…nunca!hemofilia5

A common fear among young men is: not to be able to get a job …./ O que vou fazer quando crescer??

December 3, 2009

So, gathering and listening to their concerns, experiences and doubts is fundamental. Orientation for adecuate, interesting  careers and jobs has been one of our prevalent goals the last 2 years at our hemophilia Center of  Hospital das Clinicas. Just to inform you: the most common jobs are 1) the family ones (father and son, brothers together) where the young man with hemophilia handles the clients/customers aspect, the administrative or and the comercial part.

2) Technology  (technicians in computers, web design, etc -i say etc because I am ignorant in these matters :)

3) Nurse and medical careers

4) Music business (musicians, band, singing , entertainment)

Picture 9Uma das grandes preocupações do nosso Centro de Hemofilia nas Clinicas, é orientar e acompanhar de perto a transição para a vida do primeiro trabalho, portanto a atenção começa nos anos anteriores, ou seja no colegial.

O grande receio dos meninos é não saber qual seria o melhor trabalho para eles, e depois como conseguir um emprego!

So para mencionar e dar algumas ideias dos tipos mais comuns de trabalho entre nossos adultos com hemofilia:

1) Trabalhos em empresas familiares: pais com filhos, ou entre irmãos : onde no caso o portador da hemofilia se encarrega da parte de atendimento ao cliente, fecha negócios, toma conta da parte contável, visita (se tem carro e está em boas condições físicas) clientes novos , etc

2) Informática (tudo o relacionado com as chamadas novas tecnologias: computação, web design, desenho industrial, etc)

3) Arte e música (músicos, bandas, entretenimentos)

4) Area administrativa e economia

5) Enfermagem e áreas relacionadas como laboratoriais por exemplo e ou farmaceuticas.

Este tema será abordado mais amplamente nos próximos posts (entrevistas, curriculum, cursos etc)Picture 6


I love to be in your company / Amor de estar juntos

November 28, 2009

BROOCH from Y. Watanabe and Y. Uchida

One of the main topics of life  is LOVE .  I want to talk about the different manifestations of loving people: friendlyness is a state of being (if the word exists :)

in my practice when I am i contact with teenagers, being with friends boys and girls is even more important then dating actually. As human beings we love to have “good” companies, friends to share our moments with.

I always urge young men to “work out” communications skills to have good chances to make new friends: ex:

-be curious about the other person but not invasive

- pay atention to what the other one is saying, make eye contact.

- laugh about yourself if something goes wrong…don´t take yourself so seriously! :)

- breath ……….to be relaxed

- smile a lot

-when you feel annoyed try to express as soon as you can what upsets you

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O sentimento de Amar pode se manifestar de diferentes maneiras: hoje vou falar do amor na amizade!

Na verdade , conversando com muitos adolescentes no hospital, ficou muito claro que ter amigos e amigas é muitas vezes mais importante do que “ficar” ou ter “namorada”. Ter companheiras para sair, amigos para conversar faz muito bem para o florescer de sua personalidade. (de novo, na verdade, faz bem para a alma)

De todas formas existem recursos que se aprendem (praticando tanto na imaginação como na vida com o outro) que ajudam a criar vínculos de amizade e de relacionamento amoroso:

- Mostre-se curioso mas não faça perguntas invasivas

- Preste atenção quando o outro fala e faça contato visual (olhar nos olhos)

-sonria

-ria de você mesmo….al final um erro é uma boa oportunidade para aprender mais coisas sobre você e sobre o outro! :)

- respira…………..assim você relaxa e o nervosismo vai sumindo.

X like X chromosome / X como cromossomo X

November 24, 2009

I would like to indicate the excellent monograph of RIVA MILLER about GENETIC COUSELLING, written for the WFH.toh-25_english_genetic_counselling ! click and read it enjoying a intelligent and clear text.

X like X chromosome:

“X is the sex chromosome found twice in normal females = XX and once, along with a Y chromosome, in normal males = XY.”

The X chromosome carries hundreds of genes (informations about how you are going to be). Few, if any, of them have anything to do with sex.

The inheritance of genes on the X follows special rules because males have only a single X chromosome, and genes on the X are expressed in males.

Genes inherited in this manner are said to be sex-linked or, more precisely, X-linked. An example is Hemophilia A and hemophilia B.

A boy with hemophilia is Xh Y (the h is the hemophilia gene) and the carrier of hemophilia which is a woman will be XhX.

Sometimes both X in a woman can have the gene of hemophilia…this is very rare and is due to A MUTATION in the other X chromosome or in both. We have cases as I wrote in an old post, of women with hemophilia.

X chromosome

X COMO CROMOSSOMO X : “cromo = cor e somo/a= corpo…..O X é o cromossomo sexual que se encontra duas vezes no caso da mulher (XX) e uma vez só, junto ao Y no caso de um homen (XY).

Estes cromossomos carregan informações sobre muitas características suas…como se vai ou não ficar careca ou se vai ter algumas disfunções como por exemplo a Hemofilia A e a Hemofilia B.

São características ligadas ao X.

Uma mulher portadora da hemofilia terá a hemofilia ligada à um dos X (exemplo XhX onde o h é a hemofilia).

Um homem que tem hemofilia será XhY. No caso do homem a hemofilia se expressa porque o X é que está sozinho!

Algumas mulheres (muito muito raro!) são consideradas hemofílicas porque além de ser portadora , o outro X delas sofre uma mutação genética e não funciona direito em relação a produção do fator da coagulação 8 ou 9.

Lembrem que: quem tem hemofilia nasce com a informação (gen da hemofilia) que o fígado não poderá produzir fator 8 ou 9 o suficiente ou produz o fator mas ele não funciona! fazendo que a coagulação seja muito muito lenta

HemoAção em Arabe / Explaining why a bleeding doesn´t stop quickly

November 19, 2009

Click on the pictures to see them better! Cliquem nas fotos e aparecerão maiores…:) dad, this is for you, I honor your teaching along the years. Today 19/11/09:  6 months since you died.

Para você, pai, honrando o que você sempre quis…que aprendesse o Arabe.

Hoje faz 6 meses que você morreu. I love you.

hemoacao-em-arabe-2

Rehabilitation now!! Adrion is excited to start…physiotherapy

November 8, 2009

IMG00222-20091105-1317Remember him with the preparation we did with the sand play technique before the surgery  http://blood4.wordpress.com/2009/09/25/sandplay-techn…-para-cirurgia ?DSC00900

Well now he is ready for his sessions of physiotherapy….it hurts but he is willing to excercise, to get stronger…and walk soon. I like you so much Adrion.

And your parents are with you too…it is a new phase.

R like RAGE / R como RAIVA

November 6, 2009

Se tivesse que escolher uma cor para a RAIVA colocaría o VERMELHO.

Más , quem incorpora legal o momento PICO quando sentimos  raiva e ira ,é o Hulk!

Eu assistía fascinada o seriado nos anos 70/80 e achava o máximo quando o dr. Bruce tentava se controlar para não machucar alguém ou destruir alguma coisa…más não dava!!! :) a raiva dele também era sempre COM RAZÂO!!!  al final, ele era uma vítima, um fugitivo, um não amado e um defensor público!hulk

No filme recente 2008? achei interessante rever para analisar mais a questão da RAIVA: perceberam que, quanto mais o Dr Bruce “quer tirar dele mesmo o hulk, esse lado monstruoso” menos ele se da bem?? e cada vez que ele se aproxima do trabalho de se aceitar com este problema, quanto MAIS ele escuta a namorada, olha para ela, ele se humaniza?? ou seja , temos que aceitar nossas dificuldades para poder transforma-las, não adianta projetar nos outros a causa de nossa raiva, não adianta dizer eu vou TIRAR isto de mim! volta contra nos :(

R  LIKE  RAGEhulk-from-the-movie-wallpaper-34-l

I used to love the hulk  episodes when I was a kid…the amazing thing about him was the transformation: i understood him so well! But I would have chosen another color for rage: RED not green! whatever…the man/monster was a hero and the conflict between the beast and human being was obvious. Nowadays; I look at the movie and my vision is still sympathizing with him, BUT I ALSO LEARNED THAT if we want like Dr Bruce to ” take it out of  me” refering to the HULK side, we cannot! the more we deny or detest our destructive or rageous aspects, the more they control us.! Rage is a  consequence of anger…and we get angry…and sometimes it is very well to get angry. We can´t be like soft as a banana always.! but yes, we must learn to ADMINISTRATE our rage, and not destroy everything. And this task requires a lot of ENERGY, but at the end  we feel much better when we can put the person in her place without calling him names, or smashing something…

Interview

October 20, 2009

Picture 13the rest of it is at VOLUNTEER  NEWS at www.wfh.org

BE A VOLUNTEER, try the experience

SEJA  UM VOLUNTARIO, EXPERIMENTE!:)

The opposites : Flowing and Clotting for ever

October 15, 2009

Our blood is always flowing and clotting, and in this way repairing little or bigger bleedings in our body.

A constant balance is required.

Like in our life, we are always “flowing” or trying to…like on a dancefloor, or when ideas come and flow over a screen or a piece of paper…

and we are “clotting” too when we give form to a project, when we finally decide to “do” something….

It´s a metaphor that i like to use in my life….

When to flow and when to clot….that is A question ! :)

ps: this drawing is made by Cloves a teenager I met at the hospital and was part of a group therapy for 7 years with my coordination.

He was 14 when he did it.

After studying Blood characteristics and clotting he draw what represented to him the opposites in blood.pg-84

PARA AS CRIANÇAS: Um super dia para vocês!!/ Happy day for you little guys!

October 11, 2009

IMG_9162 copy 12/10 :KID’ S day here in Brazil… Um feliz dia para vocês  queridas crianças…beijos!

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Photo 113Photo 189Photo 124DSC01257Photo 86

Photo 105Hemog 038Photo 97Photo 195Fotos AMSTERDAM08 003

In Montreal different tribes united for the wellfare of the big hemophilia family

October 4, 2009

I am a consultant volunteer for the WFH and this is on the left Assad Affar who is Director for all the projects for Middle East and Africa, I have travelled to Egypt and Jordan with his coaching. And with him is Dr El Kiaby

hematologist, a volunteer as well at the Wfh.Picture 4We discussed at the Global Forum what would be the plans for next year in the psychosocial area for Egypt, Syria maybe and Jordan.DSC01311my friend Gordon Clark on his new vehicle, he is with the WFH since for ever and an active member of the board.

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Angela Forsight, is physiotherapist and a volunteer at the Wfh like me. She was in the team of Novo Nordisk proposal to discuss e analize new approaches for many countries in treatment for hemophiliacs. Although most people who had hemophilia gor inhibitors too, the focus was to imagine and criate for all the population with hemophilia. Next to me was Matt who is an active member of the hemophiliac community and participates in workshops and other activities I’ll ask him to tell me.DSC01316

And here the big new team!!! a mix of  different profissionals from the hemophilia area, pharmaceutical industry of Novo Nordisk and fondation Paul, organizers of the event from The Wright PerspectiveRobin and Hellen(on the left), and members of the hemophiliac representatives Kerry in red :) , and 4 gentlemen named by Matt, Andrea(extreme right side), Sid (with hat) and Werner(smiling in the back behind my friend and mignonne collegue Eliane .

And an interesting fellow who works a lot in criating program of treatment with people with diabetes next Kery in red is Soren)

I’ll have to check for more names…BUT THAT EVENING WAS  just sweet and gentle.

A family that struggled so much: kids growing /Uma familia crescendo

September 30, 2009

photo-258as 3 mulheres de GeovanaGeovana, 5 years old drew me (the one at the right :) , the secretary of our center Val and the 3rd one is Lais the voluntary that plays with them. Thank you for drawing so cutely!!

I met Lucimara, in 2000, she was in her early twenties, single mother with a one year-old boy : Guilherme! this little one in the picture…he is now almost 9 and has going through several head surgery  because of internal bleedings when baby.Today, he is a smart kid, goes to school, plays with friends and has a sister Giovana, 5. Lucimara is a woman that I admire a lot.  She  grew up, learned everything she could about hemophilia, she did the course with our nurse Eliane to learn how to infuse factor to her son, she changed job, got a better one, and she is an independant woman.

I remember the first time she was in my little office at the Center and she was always so scared of any  normal movement of her little boy, afraid of everything….well, look at her face now :)

Conhecí Lucimara em 2000, quando ela veio fazer a sua primeira consulta para Guilherme o filhinho Guilherme, na época com um ano de idade. Hoje , como podem ver na foto ele é um fofo, esperto, leva a vida de qualquer criança de 8 anos! Mas se vocês souberam pelo que ele passou nos primeiros anos de vida: 5 cirurgias na cabeça , veia com acesso difícil teve que colocar durante 2 anos e meio um catéter e tudo isso com a mãe solteira, lutando por um trabalho mais digno, lutando por sua independência e  por uma vida digna. Giovana nasceu ha 5 anos e assim a familia cresceu.

Lembro da Lucimara na sua primeira visita, pulava da cadeira de mêdo cada vez que o Guilherme fazia um movimento !

olhem para a cara dela agora….!:) bonita e serena … THIS DRAWING IS FROM TODAY  at age 9! his flying motocycle and sportive car going home!!!locomoção do Guilherme


I still want to play before talking serious:)/ “quero brincar com imagens, nada a declarar ainda sobre trabalho!”

September 29, 2009

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SANDPLAY technique to cope with an orthopedic surgery/ Brincando na caixa de areia e se preparar para cirurgia

September 25, 2009

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AFTER THE SESSIONS: he is brave, he knows that he is in pain sometimes, but that he is recovering well.

Adrion, you rock!

ADRION  VOCê é um menino inteligente, colaborador e sabe lidar com a dor (respirando profundo, se ajustando, pedindo ajuda aos pais e profissionais) você é um exemplo para  todos nos!DSC00899BEFORE THE SURGERY

few sessions of play therapy:Sand Play

Algumas sessões de Jogo de Areia: montando a cena , brincando de cirurgia,lidando com os mêdos e expectativas.DSC00810DSC00824DSC00808