November 11, 2009

siblings: our first partners / o- a irmã(o): o/ a primeiro(a) sócio/a! ;)

Siblings in a family with hemophilia have their space too!

And it is a Must. A brother or a sister must get involved in hemophilia in the way that they have to know about the disfunction as much as their brother. They don’t have hemophilia which means that they must have their life and activities that are suitable for them. If they like rugby they ‘ll do rugby, play soccer , practice boxe or play with his brother who has hemophilia in a gentle way with a video game!

What I want to say here is that the fact that one child is allowed to practice an activity and the other one isn’t , can be considered by the family as a good oportunity to work different educational topics as:

differences between people, generosity, tolerance, coping with feelings like envy, jealousy, anger, frustration, creativity…

Let’s realize that who has a family with brothers and sisters learn quicker to share, to negotiate, to discuss issues and find solutions.

All that because a child with hemophilia has partners to deal with in order to get from the parents what they want and need! 🙂 let’s remember also that siblings unite “against” the parents sometimes! and it is wise from the parents to let this happen.

Ter uma irmã ou um irmão é a primeira experiência de sociedade para alguém dentro de uma familia. A importância dada ao fato de ter um irmão é independente dele ter ou não uma disfunção!

O irmão é o primeiro companheiro diferente de mim mesmo que tem suas peculiaridades, suas qualidades e defeitos…e tenho que dividir com ele ou ela o afeto de meus pais 🙂

Se tem hemofilia, ele terá que se adaptar as atividades que lhe são permitidas e benéficas…e o outro irmão que não tem hemofilia deverá também traçar seu caminho e realizar tudo o que puder! pode ser difícil para os pais, ver as diferenças entre os filhos..más CORAGEM, somente permitindo que cada um deles se expresse e se desenvolva COMO PODE E DEVE, somente assím, nós pais podemos criar seres independentes e fortes espiritualmente.

ACEITEMOS as limitações para, a partir delas, fluir nas profundezas da vida nesta terra.

Paz a todos.

Posted by on November 11, 2009 in children with hemophilia, siblings and hemophilia and tagged , .

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November 3, 2009

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

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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.

Posted by on November 3, 2009 in Bloody Art and photography, teens at the ambulatory of hemophilia and tagged , .

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November 1, 2009

Maria, life and me/ Dona Maria, que fofa!

She is a wonder woman: 72 and 7 sons and daughters. The last one is 36 years old! 22 grand sons….:)

She has inhibitor of factor 8 adquired , she´s quite a mistery, no serious hemorrages for loong years now.

She takes care of her house, cooks, cleans, iron everything, she is always doing something!

Last Thursday she told me she has 2 days ago felt nervous, trumbling and sad suddenly…she cried, and told me that she decided to pray to Virgen Mary …and she was calm and peacefull again.

We talked a lot. I am with you dona Maria.

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Esta é realmente a mulher maravilha! dona Maria tem 73 anos, 7 filhos e filhas e 22 netos….

ela vem no nosso centro fazer anualmente seu check up porque foi diagnosticada há anos com inibidor adquirido de Fator 8! é como se fosse hemofílica e com inibidor!

mesmo assim ela não padece de hemorragías severas e faz TUDO em casa!! lava, passa, prepara com carinho a janta para seu caçula de 36 anos que também cuida com amor da mãezinha (ela pega no pé dele ainda as vezes 🙂

Ela é a velhinha mais linda do mundo para mim!

Na quinta feira ela estava me contando que 2 dias atras estava: ” sentindo muito nervos e tremendo e eu estava chorando muito ” (cansaço e tristeza de se sentir sozinha as vezes). Aí ela se ajoelhou (até fez questão de me mostrar) e rezou pela Nossa Senhora e tudo melhorou na hora: uma calma e reconforto !

REZAR é um remédio SIM!

Posted by on November 1, 2009 in psychology and tagged , , , .

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October 25, 2009

Y as Young / Y como Yuhuuuuuuuuu!!! :)

Y as YOUNG : “Not far advanced in life, growth,

development… of recent birth or origin ; still near

its beginning…”

To live with hemophilia in an easier way, we have to use PREVENTION.

Our children learn with us adults, that it is important to report quickly when they get hurt, or when they feel that something is wrong. If a child with hemophilia learns in an early age how to collaborate in his treatment, he will have more chances of a happy life. Even if he has severe hemophilia and has to treat spontaneous hemorrages in a same joint , he will get to understand his condition and what options that he has to improve his condition: physiotherapy sessions, ocupational therapy, prophylaxis if available, change of routine…

BEING YOUNG or having a young mind means being OPEN to new solutions, new ways to solve the same problems.

Y como YUHUUUUUUUU: “grito de alegria para comemorar ato vitorioso, momento de conquista…”

Pessoal, não achei nenhuma palavra no dicionário com Y…:) por isso me permití colocar esta expressão de alegría que eu uso muito!!

VAMOS LEMBRAR OS MOMENTOS “YUHUUUUU” DA NOSSA VIDA??

No congresso de hemofilia um membro da Associação de Hemofilia da Bélgica que se chama Patrick, me disse que um dos momentos felizes dos meninos é quando na idade de 7-8 anos eles recebem o diploma da capacitação de AUTO-INFUSÃO!!! o próprio centro fornece com as assinaturas dos médicos e enfermeiros o diploma para o jovem…que fica todo orgulhoso! legal neh?

No nosso centro crianças de até 4-5 já conseguem fazer a auto-infusão…eu gostaría de fazer a mesma coisa e dar um diploma para eles de nosso centro. Vou propôr a idéia.

Posted by on October 25, 2009 in children with hemophilia, HOSPITAL DAS CLINICAS and tagged , .

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October 22, 2009

True Blue/Purple Roses – Verdadeiras Rosas Violetas

Os cientistas Japoneses  da empresa Suntory descobriram como obter rosas azuis manipulando o DNA claro!isto aconteceu em 2004 e desde então são vendidas para expressar amor .

Japanese cientists from Suntory beer company have discovered how to create blue roses…manipulating the dna of course! it happened in 2004 and since then they are very much requested by refined lovers 🙂

Picture 17

Posted by on October 22, 2009 in blood clotting Hemostasia, Bloody Art and photography, love and tagged , .

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October 21, 2009

Glóbulos vermelhos? Red cells?

no, red fishes  2003 by Ninagawa Mika in “Liquid dreams” http://ninamika.com

não, peixes vermelhos, 2003 por Ninagawa Mika em “Liquid dreams”

Posted by on October 21, 2009 in Bloody Art and photography and tagged .

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October 20, 2009

Interview

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

BE A VOLUNTEER, try the experience

SEJA  UM VOLUNTARIO, EXPERIMENTE!:)

Posted by on October 20, 2009 in hemophilia, psycho social care for people with hemophilia by Freder and tagged , .

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October 19, 2009

Give fruits and flowers / Presenteia flores e frutos

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Posted by on October 19, 2009 in Bloody Art and photography, SYMBOLS and tagged .

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October 16, 2009

soullyness…..alma em disfarce

A arte de Susan McKivergan, the Digital Muse at: www.thedigitalmuse.netPicture 7Red is always used to mark strenght and fragility at the same time, O vermelho nos leva a sentir força mas também fragilidade…o efêmero, a vida é mais do que o coração bombando…temos que amar nosso coração  aceitando as  transformações…

Picture 6

Posted by on October 16, 2009 in Bloody Art and photography and tagged .

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October 11, 2009

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

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

DSC00901DSC01245Picture 13Picture 6Photo 255

Photo 113Photo 189Photo 124DSC01257Photo 86

Photo 105Hemog 038Photo 97Photo 195Fotos AMSTERDAM08 003

Posted by on October 11, 2009 in children with hemophilia, hemophilia and tagged , .

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October 10, 2009

Don’t run away from factor! Não tenha medo de tomar o fator! 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 comprendre  pourquoi c’ est important que tu prennes ton facteur.
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COMO AJUDAR? HOW TO HELP?

1. Não transforme a ida ao centro de hemofilia num “castigo”, porque a criança se machucou. Ao contrário: é UM PASSEIO!

1. Going to the center of hemophilia must never  be a “punishment” because he hurt himself. On the contrary it will be a visit to a friendly place.

2. Tomar o fator é rápidamente feito com a colaboração tanto da familia, do pequeno paciente e da enfermeira, por isso prepararse com uma pomada anestésica antes , falar o que vão fazer depois para curtir um filme, um jogo em casa é importante.

2. Infusion of factor 8 or 9 isn’t a long process if everybody (family member, the little patient and nurse) participate with patience, and efficiency. For exemple putting a bit of  local anestesia, or telling him that afterwards they watch a movie, play a video game is important to show that this is a stress that will pass.

3. Brincar de médico, fazendo de conta que injeta o fator, achar a veia, colocar torniquete etc é importante para se familiarizar com os objetos desde cedo  e também para saber que ele vai sentir uma picada.Picture 14

3. Doing role playing games is important to make him lose fear of needles, or being punctured. He can be the nurse, the mother or father will receive the factor, it is a game… that gives him the sensation of control and familiarity.


Posted by on October 10, 2009 in education;health, HEMOACTION in English and tagged .

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October 7, 2009

Raspberries: soft red…miam! / Framboesas…lindo veludo avermelhado

Picture 5In the street of  Montreal….joy.

Nas ruas de Montreal…alegria.

Posted by on October 7, 2009 in Bloody Art and photography.

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October 5, 2009

On love in 2009: a good movie Twilight / Crepúsculo: uma proposta de amor em 2009

Picture 6

When I took my 3 children (Da, 18..Rubi 12 and Iggy 9) in January to see this film…i must confess that the first 10 minutes were a torment..i found myself critisizing and mubbling that I was going to endure for an hour ! but , i remember looking at the 3 faces of my beloved and they were paying attention….!so, I said hey frederica what ‘s happening to you? you have always liked and even studied Vampires, blood symbolism…

give yourself a chance and WATCH! And the story is about Loving, caring in an era where sex is sold as the first thing you should do, or know about ….in the story “making” love is a construction of  keeping a distance where you can truly see who is in front of you and WAIT for the right moment to give yourself, your body and soul to someone.

The vampire, symbol of sucking your life away to survive (blood-soul), is aware of his shadow, and he prefers to avoid her first, and then she wants to face him, and they HAVE TO TALK.

The beauty of this movie is to show young people (and older ones 🙂 that we can rescue our inner pure teen and enjoy all the sensuality that exist in holding hands, writing a poem, stroke a face, kiss  a hand which are

gestures that are forgotten. I loved the message , i saw my adolescence and i realized that these adolescents of today LOVED the movie too!!Picture 7

so, these values of respect, caring, sensuality and generosity are what they want for their lives…

IMAGINATION IS WHERE YOU CAN RENEW YOURSELF

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vou escrever mais tarde em Português queridos leitores…aguardem por favor


Posted by on October 5, 2009 in love, psychology, YOUNG MEN STORIES and tagged , , .

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October 4, 2009

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

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.

Posted by on October 4, 2009 in hemophilia and tagged , , .

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