April 6, 2011

HERO initiative (Hemophilia Experiences, Results and Opportunities

I AM PART OF THIS BEAUTIFUL PROJECT OR INITIATIVE  since 2010. We are a  multidisciplinary group from several countries working together with Novo Nordisk and its big team of collaborators.

I am happy to inform that  3 abstracts submitted to next ISTH congress in Japan July 2011 have been accepted! We will be able to share with the world about  important results of our qualitative and quantitative  studies done in more than 10 countries about people with hemophilia and their carers….please welcome to the link below and check it out!


http://www.novonordisk.com/about_us/improving_haemophilia/hero-haemophilia.asp


Can be accessed via www.changingpossibilities.com

Posted by on April 6, 2011 in hemophilia and tagged , , .

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March 24, 2011

G like GRAB / G como GERAÇÃO

fotos-gerais-08-277Grab me , hold me, touch me, take me in your arms

Posted by on March 24, 2011 in Bloody Art and photography, hemophilia.

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March 24, 2011

Imagining good things is called Visualization/Imaginando coisas boas…

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Posted by on March 24, 2011 in blood clotting Hemostasia, hemophilia and tagged , .

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March 12, 2011

2011: What’s up? / Pro20 11jetos

1. I will do a mini  literacy study  with  children with hemophilia for the Brazilian version of  CHO-KLAT ( Canadian Hemophilia Outcomes -Kid’s Life Assessment Tool ). This will be a next step after the debriefing phase held successfully in November 2010 in the hemophilia Center of Hospital das Clinicas, FMUSP.

1. Depois de finalizar uma etapa importante do processo de validar o CHO-KLAT para a nossa realidade brasileira, surgiu a necessidade de elaborar um curto questionário sobre compreensão e leitura que irá ser aplicado ANTES de aplicar o CHO-KLAT. Este questionário que avalie a qualidade de vida das crianças e jovens com hemofilia, é geralmente auto-aplicado. Com esse mini questionário poderemos saber se a criança é capaz de ler e entender corretamente para poder responder bem as perguntas! boa iniciativa não? validar 100%  :)†

2. I am studying about Systematic Reviews and with a group of physicians and psychologists from Italy and UK we could registered  in Cochrane Collaboration  this title  Psychological Interventions for people with hemophilia and their family. A lot of work ahead!

This is the symbol of  the COCHRANE Collaboration: the outside shapes represent   a stylized uterus honoring the first studies the collaboration did in obstetric and perinatal cares. In the inside is a meta-analysis graphic  of 7 studies.

2. Faço parte de uma projeto de Revisão Sistemática pela Colaboração Cochrane  onde o título que registrei junto a um grupo de colegas psicólogos e médicos se chama: ‘Intervenções psicológicas para pessoas com hemofilia e suas famílias”. Estamos na fase da elaboração do Protocolo e este ano saberemos todos mais  a respeito do qual ou que tipo de intervenções  e estudos foram realizados na área do cuidado a pessoa com hemofilia.

3. My third project is called P-TET (Pedriatic-Thrombosis Educational Tool):  a set of educational and playful way to learn about the disease and its care for children. It is inspired on my initial initiative called Hemoaction flash cards.

Here a taste of a card:

3. O projeto que segue é criar um baralho (P-TET) parecido ao Hemoação  , ou seja um instrumento lúdico educativo para crianças que tiveram Trombose . Ou seja se bem é o oposto de o que uma criança com hemofilia padece: sangramentos longos e repetitivos, quem tem trombose deve tomar medicação para não ter outros episódios de “parada” de fluxo , ou ter coágulos obstrutivos…e deve aprender a se cuidar ja que certos efeitos colaterias da medicação pode levar a sangramentos também se nao tomarem precauções para evitar machucados.

Posted by on March 12, 2011 in children with hemophilia, hemophilia, HOSPITAL DAS CLINICAS and tagged , , , , .

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March 6, 2011

Another end of a day somewhere in Africa….

by MANOELA  LIMA,  a wise and caring observer


Posted by on March 6, 2011 in Bloody Art and photography, SYMBOLS and tagged , , , .

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February 28, 2011

hide and seek / me escondo, me escondo, me ache me ache


Posted by on February 28, 2011 in red/orange photography and tagged , , , .

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February 21, 2011

The events in Egypt made me remember again…I met sister Emmanuelle when I was 15 / Eu conhecí a irmã Emmanuelle no Cairo

HANDS of love:

These hands have worked with the “zabbaleens” in Cairo. I was studying at the Sacred Heart and Sister Emmanuelle was invited to talk about her work living among the people who take care of our garbage, our dejects, the stinky and what we consider useless stuff of our day-to-day lifes.soeur-emmanuelle-002

She told us, at the time she was 63 that she used to be vulnerable to diseases before joining these hard workers. After she lived among them she discovered that she was so strong! She died in 2008 at the age of 99. ADIEU!

Quando a vi, sorridente, cheia de energia na idade de 63 anos… e vivendo ha muito tempo com os lixeiros e suas familias, alfabetizando, convivendo com elas nas difíceis condições de vida com fé no coração, eu  disse para mim mesma: qué mulher! cómo ela consegue?

Ela nos contava que, antes de morar nas favelas de lixo acumulado, ela adoecía frequentemente na terra natal França, más desde que morava entre ratos e lixo havía percebido o quanto ela era resistente!soeur-emmanuelle-003

Faleceu Novembro 2008 aos 99 anos. OBRIGADA pelo exemplo de vida e pelo seu amor dado as crianças egipcias.

Posted by on February 21, 2011 in Bloody Art and photography, education;health and tagged , , , , .

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January 23, 2011

HemoAção em Arabe / Hemoaction in Arabic, explaining the importance of self-management

The WFH (World Federation of Hemophilia) and i are partners now in this flashcards project which be available in 5 languages for all NMO (National Member Organization) and Hemophilia Centers around the world. http://www.wfh.org

Click on the pictures to see them better! Cliquem nas fotos e aparecerão maiores…:)

N.B: Dad, this is for you, I honor your teaching along the years, you always insisted that I should learned Arabic. 02/03/2010:   a year  and a half  since you died. I love you.

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

Um ano e meio ja passaram desde que você faleceu. Te amo.

hemoacao-em-arabe-2

Posted by on January 23, 2011 in children with hemophilia, hemophilia, hemophilia in pictures, World Federation of hemophilia and tagged , , , .

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January 18, 2011

DRAWING AND FLOWING / DESENHANDO FLUINDO

hemo08Slides that boys at the center of hemophilia drew : importance of sport activity! NOT TOO MUCH OF INTENSITY, KEEPING THE MUSCLE TONICITY AND STRETCHING.ESTOS SLiDES FORAM DESENHADOS POR JOVENS com hemofilia PARA MOSTRAR A IMPORTÂNCIA DA ATIVIDADE FISICA!hemo10REMEMBERING THAT IT IS IMPORTANT TO NOT DELAY IN SEEKING FOR FACTOR REPLACEMENT OR CONSULTING IF ANY SWOLLEN OR PAIN APPEARS. 🙂 RELEMBRANDO SEMPRE QUE  TEM QUE INFUNDIR O FATOR  OU CONSULTAR  ALGUEM DA EQUIPE DO SEU CENTRO SE  SURGIR DOR OU INCHAÇO!hemofilia3




Posted by on January 18, 2011 in children with hemophilia, hemophilia and tagged , , , .

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January 8, 2011

new born…new year..growing together in 2011

To all my friends in this beautiful web , net of co-workers, net of  communication in different forms: this is adam, my friend’s first son. My friend Walid is an active member of the Hemophilia community in Alexandria, Egypt. 

Posted by on January 8, 2011 in Father, hemophilia and tagged , , .

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January 2, 2011

2010 in review from WordPress and blood4 !

When I WAS A KID, I used to be called “petit singe” or “little monkey” because of  my habit to pull so many faces 🙂 so, from a monkey to another: THANK  YOU to wordpress team for the space, for helping me when I asked for support to post images and for the opportunity to do what I like to do: talk by, mostly, IMAGES!

 The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

Healthy blog!

The Blog-Health-o-Meter™ reads Wow.

Crunchy numbers

Featured image

About 3 million people visit the Taj Mahal every year. This blog was viewed about 32,000 times in 2010. If it were the Taj Mahal, it would take about 4 days for that many people to see it.

In 2010, there were 104 new posts, growing the total archive of this blog to 373 posts. There were 143 pictures uploaded, taking up a total of 210mb. That’s about 3 pictures per week.

The busiest day of the year was June 18th with 197 views. The most popular post that day was hulk-from-the-movie-wallpaper-34-l.

Where did they come from?

The top referring sites in 2010 were en.wordpress.com, search.conduit.com, blog.kelleycom.com, facebook.com, and mybloodbrothers.com.

Some visitors came searching, mostly for vida selvagem, fotos, movie wallpaper, selvagem, and hulk.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

Agressividade nas crianças…e na hemofilia?/Agressiveness in children…what about hemophilia? September 2009

2

hemophilia: slowness in doing an efficient clot May 2008
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Posted by on January 2, 2011 in hemophilia.

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December 29, 2010

RELIGIOSIDADE SPIRITUALITY

Wish to see  the goodness, to continue my life with joy and simplicity.

Thanking  the divine for showing itself 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.



Posted by on December 29, 2010 in HEMOACTION in English, Religion, SYMBOLS and tagged .

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December 28, 2010

O que é HEMOFILIA? / what is hemophilia com algumas imagens

EXPLIQUE COMO SE FOSSE PARA UM AMIGO: ” QUANDO ME MACHUCO E SANGRO ( por fora ou por dentro do corpo), EU DEMORO MUITO MAIS TEMPO QUE VOCÊ. PARA PARAR DE SANGRAR. E essa DEMORA NÂO É BOA PARA MEU CORPO. TENHO QUE TOMAR UM REMÉDIO chamado FATOR PARA ESTANCAR O SANGRAMENTO.

LEMBRANDO DESTAS IMAGENS VOCÊ SERÁ CAPAZ DE DEFINIR HEMOFILIA:

a coagulação é lenta como uma tartaruga.

Para agilizar e normalizar o tempo de coagulação tem que infundir o fator de coagulação que falta

e a veia cicatriza com um coágulo bem feito!

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EXPLAIN HEMOPHILIA IMAGINING THAT YOU ARE TALKING TO A FRIEND: ” Hemophilia is like that: when I get hurt and bleed (inside my body or if I have a cut) I take too much time to clot . Something is missing in my blood that’s why I bleed longer. I have to infuse what is missing, a clotting factor

JUST REMEMBER THIS SEQUENCE OF IMAGES:

bleeding, slowness turtle, factor, speedy turtle, clot, healing

Posted by on December 28, 2010 in Definition of hemophilia, education;health, hemophilia and tagged , .

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December 28, 2010

My presentation in the Nurse workshop: preparing a 5 -year-old boy for a joint aspiration with local anesthesia….a preparação com ludo terapia de um menino com hemofilia, 5 anos, para um procedimento no próprio ambulatório

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fcassis-istanbul

CLICK HERE in fcassis -Istanbul and enjoy the spirit of the work.

Foi muito interessante trabalhar com ludo terapia com Gabriel de 5 anos. O objetivo era fazer com que ele ficasse tranquilo durante a punção do joelho com anestesia local e que ele possa participar de seu tratamento entendendo cada passo e a importância de praticar os exercicios de fisioterapia depois do procedimento.

Usei as técnicas seguintes: ludo com as cartas do Hemoação, aprendizagem da técnica de respiração para controlar ansiedade e possível desconforto com a agulha, dramatização para elaborar o mêdo da agulha, e a fabricação de um biombo de cartulina para lhe a dar a opção de esconder ou não a visão do joelho sendo puncionado.

A aprensentação no workshop das Nurses (enfermeiras ) no Congresso Internacional de Hemofilia foi um sucesso e os desenhos do Pavão www.marcopavao.blogspot.com colaboraram intensamente na mesma!picture-10

Posted by on December 28, 2010 in children with hemophilia, hemophilia and tagged , .

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December 27, 2010

ENJOY MUSIC / CURTIR A MÚSICA

IT IS A GREAT EXPERIENCE  TO LEARN TO PLAY AN INSTRUMENT, BE PART OF A CHORUS OR TO DANCE. It is important to incentivate participation in different kind of art activities: like I mentionned  music is one. Painting, sculpting, learning to dance different rhythms are others.

When you have severe hemophilia A or B, when you aren’t on prophylaxis, practising sports may not be an option at all. So, the rest of your self  is active, available to enjoy, your MIND is everything. In your imagination you can visualize and with your body that has to rest or isn’t

Posted by on December 27, 2010 in children with hemophilia, flash cards, hemophilia and tagged , , .

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