Pain, discomfort, unability to practice sport or usual activities when having a hemartrose or other bleedings, frustration…or any other momentaneous situation that don’t let you flow and be calm…USE MEDITATION, or VISUALIZATION.
You don’t not necessarily to be part of a religious group, but you can take advantage of some of their methods and practices.
It is proved that through relaxation, and vizualizing (giving an image to your pain for exemple) the pain as an object that can be manipulated…the human being can manipulate the “pain” and not feel it anymore by self-hipnose.
The thing is to start this kind of approach that requires:
1. open mind to alternatives different than the usual pain killers
2. faith in your own capacitiy of relaxation and own power of imagining
3. create a space/time in your schedule
4. practising
Cheguei a última letra: o Z Percorri de A a Z para encontrar palavras que têm a ver com o mundo da hemofilia…e acho que nada melhor que ZEN para terminar:
Usamos a palavra Zen para falar de CALMA, BEM ESTAR e TRANQUILIDADE. Quem tem hemofilia sabe que deverá muitas vezes lidar com situações de dor aguda ou crônica, frustrações temporárias causadas por uma inesperada hemartrose, enfim…existem situações penosas que fazem parte do ser portador da hemofilia.
Quem tem hemofilia grave e moderada sentem mais vezes o lado da dor, imobilização até sarar por completo e o remanejamento de um plano en função de um problema nas articulações por exemplo.
Por isso, acredito que trabalhar a parte emocional e o bem estar psicológico é muito eficaz e vale a pena investir. A MEDITAÇÃO E A VISUALIZAÇÃO são instrumentos que se aprendem e de resultados comprovados
na sua eficácia em lidar com a dor e o bem estar.
when a child smiles is so overwhelming…a moment of grace. At the hospital, I have seen kids smile when they play, when they joke, when they are receiving factor replacement therapy even when they are in pain.
SMILING IS SPONTANEOUS BUT CAN ALSO BE LEARNED…. we can learn to be more lovable. 
Aqui vemos uma veia que abriu-se porque machucou, aí sangra. As plaquetas tampam o buraco (isto ja resolve o sangramento em caso de raspão, machucado pequenos), aí vem a rede de fibrina ( coágulo ) que resolve definitivamente o sangramento.
Quem faz a rede é a ação em conjunto de mais de 10 fatores da coagulação+ a própria parede do vaso sanguíneo+ Calcio+ as plaquetas+ proteína Von Willebrand+ muitos outros detalhes complexos!!
o SANGUE é sim VERMELHO e é aparentemente LIQUIDO mas ele está repleto de células como um mar cheio DE VIDA!!
if he can’t play outside yet because he is recovering from a hemorrhage, offer instead another activity explaining that he has to learn to be PATIENT and give his body TIME TO HEAL.
if the NOs are because you are afraid as a parent that he’ ll get hurt, please seek for support with a care agent at your center! Your kid must enjoy his childhood and MOVE HIS BODY.
Always give alternatives but be firm when you really have to say the word NO.
Quality of life….I am in contact with the hemophilia community for more than 15 years and if I am not wrong the concept of quality of life is new for PWH and their families.
I like the term but I don’t agree about how it is used: let explain my point of view: it seems that the priority is to have Factor for everybody and as prophylaxis. It would be marvellous I totally agree. It would prevent so much hemartroses and would make some severe hemophiliacs becoming moderate or mild…almost asymptomatics….(without symptoms of hemorrhages ) but what I SEE , what I have to live with is another reality.
It is the DAY TO DAY reality of a patient who has to DO A LOT WITH FEW ressources. Material ressources such as home therapy, or prophylaxis isn’t a reality for most countries in the world. I agree too that efforts must continue to reach that dream.
But as the title says I am a server of the psyche, a psychotherapist, and as one I am used to work with what I receive and stick to that to transform things. These things are inner aspects of personality, it is a process of transformation.
For example, imagine how would you BE with a family who knows that in other countries, Factor is available as prophylaxis ? what feelings arise? envy, rage, anger, lack of motivation….or other feelings and attitude: let see what my center offers? what is hemophilia IN ME? what can I do in my way of seing things and change to improve my quality of life?
Because what I believe is that if we spend time just looking outside of ourselves, and pity our conditions…we lose time and the oportunity to have GOOD IDEAS. Good ideas come when we realize what is missing in our way of doing things, and when we change our mind.
quality of life is a matter of HOW we see things that happen to us:
in a flexible way. We can change our ideas, we can change our mind about the way we use to think of hemophilia, being sick, troubled, in rehabilitation, in love… but OUR BIG EGO don’t like to change its mind!! that usually makes him feel “unstable, incoherent, irresponsible….etc etc” good excuses to blame always the others for what we are, for what is happening to us.
I have seen men and women with hemophilia that depressed, but have seen through their depression and have understand new things, new ways of living. Quality of life is also an attitude where the patient is not always a patient, as he sees that he is more than a person who has hemorrhages…he is a son, a friend, a active member of his surrounding even if he can;t move! he is a person who can make friends, can be helpful as help people sometimes.
Quality of life is not only about material aspects but also about psychological. To do psychology is to have a deeper look on events. And in that way events transform themselves into “experiences” .(James Hillman in his book Re-visioning Psychology explains that beautifully)
A like Prevention it seems easier right: at the center we work with the little ones and prepare them with early self-infusion, or they learn about hemophilia with flash cards, playing, drawing. They learn how to take care of themselves early. 
But I work also with people that are teenagers and adults and I find it easier, because in psychotherapy or counselling, they discover that they can choose if they want to be a victim or not. And believe me, there is happiness and good experiences in their lives.
Ter qualidade de vida passa por vários pontos:
1. Acho que ter acesso as informações sobre a hemofilia adequadas para o nível socio-cultural do paciente e sua familia é extremamente importante. Tem que APRENDER mesmo o que é hemofilia, e isso LEVA TEMPO E DEDICAÇÃO TANTO POR PARTE DO PACIENTE COMO DO SEUS FAMILIARES COMO TAMBÉM DOS QUE TRATAM DO HEMOFÍLICO.
Não adianta muito escrever coisas importantes se ninguem entende, nem consegue ler.
2 . Conscientizar que a hemofilia é do paciente e que ele tem um papel muito importante no tratamento.
1 e 2 são pontos a não ser esquecidos ja que vão ajudar a PREVENIR problemas no futuro como crianças que se expoem a situações de risco como brigas, atividades esportivas que levam a inevitáveis futuras sequêlas articulares.
3 . Acho que trabalhar intensamente a sua própria personalidade (os famosos CORPO E ALMA) ajuda muito a se sentir feliz com a vida e o que ela pode nos apresentar ou seja lidar melhor com a hemofilia.
4. Você podería MUDAR A IDÉIA QUE SE tem por aí de que portadores de hemofilia não podem ser felizes, nem produtivos porque têm uma deficiência que em alguns casos deixam um comprometimento articular.! e aproveito para perguntar: QUAL É A IDÉIA QUE VOCÊ TEM DA SUA PRÓPRIA HEMOFILIA???
5. Aceitar o que é hemofilia más não se sentir vítima dela: o que quer dizer isso?
se você é um portador de hemofilia que está sofrendo atualmente com uma artropatía resultando de sucessivos sangramentos, ou se você está realizando seu tratamento para um vírus que contraiu, ou se você está sofrendo por algum outro motivo, SAIBA QUE VOCê DEVE TOMAR SUA VIDA EM MÃOS.
Procure dar UM TEMPO PARA SEU CORPO e comece a fazer fisioterapía seriamente, comece e tome coragem para realizar seu tratamento para a hepatite ou o vírus do Hiv, comece a ler e a praticar HABITOS SAUDÁVEIS DE ALIMENTAÇÃO,(www.nutricy.com) cuide de seu lado espiritual para esse setor liberdade de culto e rituais , aprenda a ser interessante, a saber conversar, doe alguns minutos do seu tempo para fazer outras pessoas mais felizes.!
Como psicoterapeuta he visto acontecer mudanças maravilhosas em hemofílicos que QUISERAM mudar sua percepção da hemofilia e transformaram sua vida de queixas numa vida INTERESSANTE para eles mesmos e para aqueles que os rodeiam.
Esta nova visão da hemofilia aumenta a nossa qualidade de vida, aumenta nossa qualidade de ser humano.
6. As vezes é fácil, as vezes é mais árduo. Mas lembremos que:
7. É paradoxal más é assim que penso e vivo: quanto mais pensamos na desgraça que nos acomete, menos temos boas idéias para mudar nosso destino. 
In countries like ours (Brazil) and most countries of the globe (you have 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 a reality, 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 therefore be transform your “severe” hemophilia (with less than 1% of factor) to a moderate hemophilia or a mild hemophilia! (more than 5%) .
Of course this , in tems of quality of life is a huge difference! kids with the possibility of receiving factor 3 times a week can prevent bleedings, can practice more sportive activities etc…
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!
it´s about facing reality and transform it to a better one. How? well< I never believed that if you have more money, or more clothes , you are happier. It can help though
I mean, people are not only a body or a vein which will receive factor. He 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.
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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 comprendrer pourquoi c’ est important que tu prennes ton facteur.
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As parents we know that our children will have to face the days at school, later college, first job, first love… it’s an endless list of happenings, of events that we can’t control.
But what we can do is to transform an event into a SIGNIFICANT EXPERIENCE.
I want to say by that , if you, as a person with hemophilia, let your self be a victim by repeated “events” of hemorrages
you won’t change the way you see hemophilia ot other things in this life. If you change the idea you have about your genetic condition , events transform into something that teaches us how to make soul…in our life.
I want to say by that , we are responsible of what we are going to do about what we feel, think and do. We can learn with our fears, our anxiety and our doubts. Learn how to not let them take control over us.
We love and what a loving person gives in any relationship is confidence, it is a safe harbor to come back if needed, a place to get the necessary “fuel” and get back to the day-to-day challenges.
In a family with hemophilia parents must handle with calm the issues of bruises, bleedings and that your child is not yet capable to avoid the :”don’t get hurt”! , ” again? I told you” …(and it will vary from severe, moderate or mild)
Getting hurt or a bruise is not so much the big problem…the bad thing is to HIDE and suffer in silence because they don’t want to bother us, or they don´t want to upset us. Not every family in Brazil has the factor at home. And most our families live far from the center.
The child will learn slowly but firmly that he has something missing when he gets hurt and that he must take quickly the factor for his safety and the safety of his joints.
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Amamos. E quando se ama se dá confiança, se cria para o amado um porto seguro para voltar quando precisa, um lugar para recarregarse e encher o “tanque de combustível” e continuar a jornada .
Numa família com hemofilia, os pais tem que levar a questão dos sangramentos, tombos e roxos com calma porque seu filho pequeno ainda não CONSEGUE evitar cair, tombar ou resistir um convite indecente de jogar demais!
As reclamações e preocupações do tipo ” você não pode machucar! ” ah não …de novo? ja te disse” só o levam a esconder o machucado e a demorar a tomar o fator!! ISSO é o pior. Pior que ter um machucado ao meu ver.
No Brasil sabemos que nem todas as famílias têm DDU, nem todas têm profilaxia…portanto a relação é com o Centro de Hemofilia. Muitas vezes a criança esconde porque não quer “encher os pais” “preocupar os pais” nem “levar bronca” porque terão que ir ao centro que fica longe ….
É difícil ter que perder energías, tempo para acompanhar o filho de novo e tomar fator? Pode ser.
Mas, pior é perder a confiança, a relação de amor que tem que se establecer entre o menino e seu corpo, aprender a gostar de si mesmo, aprender pouco a pouco a se CUIDAR.
