mom preparing the factor and her son ready to receive factor VIII.
finding the good veins for self-infusion
March 19, 2014
range of colours: red, orange, green, blue and yellow/ Do vermelho passando pelo laranja,caminhando pelo verde, azul e fixos no amarelo
Steve BLOOM in Untamed…. a Green Iguana from Honduras, uma iguana verde de Honduras.
Super Iguana…It can fall from 15 meters and not get injured!! Parece que este animal pode pular de uma altura de 15 metros e sair ilesa! é UMA SUPER-IGUANA!
October 31, 2013
Nutrition, physical exercises and overweight issue / Comer, se exercitar e encorpar sem “muito” engordar :)
Linking 2 AMAZING THINGS IN HEMOPHILIA:
THE PLEASURE OF EATING AND TAKING CARE OF OUR WEIGHT!!
I think we can all agree that eating is a pleasure and an art….nowadays we can consciously understand the importance of a balanced diet combined with a fair sport activity. Eating and exercises are always very much linked. Consult a specialist like a nutritionist and a physiotherapist to orient your boy’s wishes and possibilities in sports and nutritional habits.
Overweight in hemophilia is a problem.
Children and teens with restrictive sport activity may happen due to different reasons: because they don’t have access to prophylaxis, or some joints are already with problems of pain and lack of mobility , or because they have overprotective parents, or because they have no interest in physical activity what so ever and have nobody to discuss about a healthy diet and about what sport is adequate to practise…) can have overweight issues which is IS NOT GOOD FOR THEIR JOINTS , BECAUSE THEY HAVE TO BEAR THIS EXTRA POUNDS AND WILL PROBABLY BLEED BECAUSE OF THE EFFORT.
Você sabe que é muito importante cuidar do seu corpo e não ficar fora do peso normal para a sua idade e para sua altura? lembra porque?
Porque as articulações não aguentam por muito tempo suportar o peso extra, elas acabam sofrendo e sangrando provocando lesões crônicas com o tempo.
joint safe and clear…just a scratch
POR ISSO LEMBREM que ARTICULAÇÕES CUIDADAS SÃO AQUELAS QUE SÃO:
1. TRATADAS RAPIDAMENTE com fator assim que começar um sangramento.
2. Fortalecidas com exercícios de fisioterapia e/ou atividades físicas adequadas
3. Articulações de um corpo leve, dentro do peso esperado para a idade e fase de desenvolvimento.
- joint safe and clear…just a scratch
October 19, 2013
Rising or Setting…the Sun is my star/ Amanhecendo ou se pondo, o Sol é minha estrela
Cada dia é uma oportunidade para “encarar” este mundo nosso, com seus momentos malucos de alegria ou de penas…momento de revisão, re-visitação onde o velho de ontem pode ser incorporado ou descartado…o novo pode ser bem recebido ou evitado…muito depende de nosso olhar. Abraço!
Each day is an opportunity to “face” this world we live in…with its crazy moments of joy or sadness… a repeated event of re-vision, re-visitation in ourselves . Maybe where the “old” can be incorporated or descarted, where the “new” accepted or avoided…depends a lot on our way of seeing things. Hugs!
CLOVIS,(who also have severe hemophilia A)when 15 , did that drawing: Super HEMO to represent the wish of a group of youngsters with severe hemophilia A and B: this super-hero would be helping other people, protecting them: he would have his own protections devices (in knees and elbows) a Platelet-gun to help healing wounds, a fibrin net to catch the bad guys and factor supplies a-go-go in his belt!
Today he is 29, he is working, in love, have friends, manages his right knee …he lives his life as a whole…with a smile, with the same spirit when i met him as a 10 years old boy!
Clovis, quando 15, desenhou este Super herói , o SUPER HEMO para representar o desejo de seus coleguinhas do grupo no Hospital das Clínicas: estávamos imaginando como seria ser um super herói com hemofilia!!! Ele seria um cara que ajuda! útil para sociedade, com recursos de proteção tanto para ele (joelheiras e cotoveleiras e fator na cintura a vontade) como para os outros: munição de Plaquetas para ajudar a sarar rápido uma ferida, uma rede de fibrina para pegar os maus!
Hoje Cloves tem 29 anos, trabalha, ama e dedica tempo para melhorar seu joelho com artropatía. Ele vive a VIDA como um todo. Sempre mantendo o sorriso que lhe é típico quando o conheci ainda criança….
I like that oldy 🙂 I continue to use psycho -education in my work with the hemophilia community.
This was my presentation in July 2010 in the WFH Congress: How to integrate psychosocial discipline in comprehensive care
Gosto muito desta velha apresentação feita em 2010, no Congresso Internacional de Hemofilia em Buenos Aires: proponho olhar para o conceito de ser um Psico -Educador como agente que aborda os temas psicosociais, atende a pessoa com hemofilia e seus familiares, más desde uma perspectiva Educacional: INFORMAR PARA FORMAR novas atitudes e comportamentos relacionados à uma condição crônica ….que possam nos ajudar a viver melhor e mais felizes.
S like SMILE : ” expression of the face with the corners of the mouth turned up, showing amusement, happiness….”
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. 🙂
S como SANGUE: ” líquido vermelho que flui ( e coagula) no corpo de seres humanos e muitos outros seres vivos…”
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 12 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!!
B
BALL: “solid or hollow sphere used in different games: basketball, soccer, volley for example”
Here in Brazil, we help families by explaining why soccer games aren’t allowed for children with severe and moderate hemophilia, or in a child who is neither receiving prophylaxis nor on a physiotherapy program: there are big chances of getting hurt seriously, because it is a contact sport, the kid runs a long period of time, can be hit by another player and or can bump his head hard or just make a target joint bleed again!. Although since 2011 prophylaxis treatment are now available for most young kids and secondary prophy also for older ones, we like to take the “soccer” topic very seriously. We prefer to tailor the YES or No you can’t.
We can’t just “prohibit” to have a ball (impossible almost, we are the country of soccer) but we can teach parents to play safely together with their sons and siblings together too! IT IS ALL ABOUT SELF AWARENESS AND LEARNING TO KNOW YOUR BODY’s POTENTIALITIES AND LIMITATIONS.
So, unless he is on a prophylaxis program it is recommended to play ball with one friend or a parent, always with sneakers and on a ground like grass or sand.
B como BRINCAR :” divertir-se, entreter-se…”
Brincar é uma atividade das mais importantes na vida de uma criança. Brincar prepara sua mente para os futuros estudos e para sua vida de trabalho na idade adulta.
Quanto mais a criança brinca mais inteligente ela fica!
Más qué tipo de brincadeiras snao boas para uma criança que tem hemofilia?
como qualquer outra criança brinquedos macios, fofos e coloridos o ajudarão a exercitar o corpo, estimular os movimentos de agarrar e tirar longe…. brincar de esconde esconde é legal, brincar de jogo da memória, jogar de montar e pintar blocos.
Quando cresce jogar video games é bom também (lógico que não por horas a fio! tem que deixar descansar a vista dele).
Convidar amiguinhos em casa para sociabilizar é muito bom. Ver filmes juntos com uma boa pipoca caseira é tudo de bom! 🙂
The Woman and the Roses, 1929 of Marc Chagall
Bella, his woman , was on several paintings were we can sense how fantasy and reality are melt , are One, forming something REAL ly Fantastic!
A Mulher e as Rosas, de Marc Chagall
Bella, sua mulher está sendo retratada mais uma vez aqui, como em varias outras obras do pintor. Nelas podemos sentir o quanto a fantasia e a realidad se fundem em algo REAL -(não)-mente fantástico 😉
Marc Chagall
I can’t yet publish the entire set of flashcards called IN-HEMOACTION…for children who are with inhibitors, on prophylaxis and /or immune tolerance treatments. I am still working on some important details to finish . But I am very happy about the results; my old friend Marco Pavão and Jones gave their fantastic hand here! beautiful cards…
But this is a pot-pourri card :)……
Pot-Pourri :new aspects of hemophilia: dealing with Inhibitors
I am complementing the old good educational tool HEMOACTION with new cards: like explaining what are and how inhibitors work in the clotting process…different treatments to solve the problem of developing inhibitors …
other cards like Physiotherapy and activities like video games are in also!
my latest articles these past two years…
i am very pleased to have learned a lot, shared my experiences of work…and be able to publish. I thank all the involved in the process.
Like in comics, inspired in mangá style, this young artist mixtures food with drawing. Tsutai- san , 22, says that her intention was to estimulate people’s imagination. Mika tem 22 anos, e realizou estos desenhos para decorar marmitas…o objetivo : provocar a imaginação das pessoas , dice. Misturando alimentos de verdade com seus desenhos tipo mangá…a mistura ficou genial! Here for example, I know that the ritual of the Tea Ceremony requires that you cut with you right hand the sweet in several small pieces to put one by one in your mouth!! not a punch! 🙂Normalmente na ceremonia do chá, você deve cortar com a mnao direita o doce em várias partezinhas antes de colocar na boca! não dar SOCOS 🙂
My work at the Hemophilia center started in 94 with my wish to work with kids. I believe that providing joy and at the same time information about treatment, about hemophilia is part of our multidisciplinary approach of living with hemophilia. And as early as possible ! :). Comecei em 94 , no centro de hemofilia do HC com uma proposta de trabalhar com crianças. minha ideia de brincar aprendendo e desde muy cedo continua fIRME 🙂 é muito gratificante ver que mesmo bem pequenos, Rafael Felipe tem 4 anos, eles se interessam em aprender através do uso do Hemoação ou do desenho…e ele ficou tb muito intrigado com o video!
Rafael Felipe was so excited to see himself in my laptop video…he is 4 and loves memory game with Hemoaction.
At the center of hemophilia, we have cases of kids and adults with inhibitors which is another aspect of living with hemophilia. 20% more or less of the population can develop inhibitors against factor 8 or 9. Remember what I wrote in my monograph “psychosocial care for people with hemophilia….”? As care givers and parents we will discover HOW each son develops his hemophilia. Well, it is about how to cope with so many details and facts that arouse through the process of living .
Just to explain in a simple way: if an hemophiliac has “inhibitors” it means that his blood doesn’t clot with the regular factor 8 or 9 replacement the immune system has reacted against the factor and see it as a strange ” dangerous” presence in blood. So, the solution to first stop the bleeding is : to use another thing called BY PASS AGENT that helps clotting and solve the bleeding problem.
Another intervention is to eradicate the inhibitors and this can be done successfully with the called Immune tolerance inductive therapy: a big amount of factor is delivered into the blood stream making the immune system get use to the factor and no more reacting against. So, most of the kids who developed inhibitors will have big chances to not have them with the treatment available.
IMMUNE TOLERANCE TREATMENT AND BY PASS AGENT : to be continued…these are just drafts!!!
GABRIEL IS 14 , AND USED WHEN BABY 3 YEARS a Port-a-cath catether UNDER THE CHEST’s SKIN WITH SUCCESS!Nowadays, we have specific fator replacement and we can put a catheter to relief the tiny and fragile veins of our babies.
The emotional aspect of it is ….acceptance and have a pro active attitude ! I can accept i have something not functioning in my body and in my mind (which are so much connected and mixtured) and after acceptance quit or face it gently and with courage
I am almost finishing the preparation of flash cards for INHIBITORS and topics related! IN-HEMOACTION 🙂
May 25, 2013
A new card …preparing IN-HEMOACTION flash cards/ Uma nova carta para um baralho novo para inibidores
VIDEO GAMES are a good option for children recovering from a bleed, or as a way to transport themselves INTO the game and BE in their imagination the best soccer player, or the dangerous warrior!! IMAGINATION has no limits and can provide a source of JOY AND FUN! Studies have shown also that even war video games like Call of Duty can improve reflexes and provide quicker decision making. Of course, balance is always a good thing: too much or TOO LITTLE is not good 🙂 just mix activities for your son; indoors and outdoors…..
video games : a good option and kids just love them!…and are good at them 🙂
OS VIDEO GAMES SÃO UMA ÓTIMA ALTERNATIVA QUANDO SEU FILHO ESTA SE RECUPERANDO DE UM SANGRAMENTO E TEM DE FICAR QUETINHO EM CASA. ALEM DE EXERCITAR SEUS REFLEXOS E PODER VIVER NA IMAGINAÇÃO O QUE ELE QUISER: SER UM SUPER JOGADOR DE FUTEBOL OU UM GRANDE GUERREIRO ! OS MENINOS GOSTAM DE PODER EXPRESSAR SUAS ENERGIAS EM COMBATES E DESAFIOS! (muitas meninas também ! 🙂 ) claro que o equilíbrio é necessário : não é para ficar horas a fio jogando sem sair de casa brincar também ao ar livre …. busque sempre achar a melhor atividade física para seu filho, o importante é se divertir e aprender sobre si mesmo.
BLOOD 4 
