I am glad to announce , with my colleague psychologist Irene Fuchs from Argentina, that since the launch of our booklet about “Communication , love and sexuality for people living with hemophilia, their partners and families” in 2011, a lot has been done!!
In 2012 we have on board the social worker and counselor Edward Kuebler, fantastic professional who organizes for example, the PEP program (Parent Empowering Parent) around the world and is actually the Vice Chair of the Psychosocial Committee at the WFH.
The English version is ready to be published and gained one more author!
The topics are several : from sexual development/phases always taking into account how important is to develop communication skills and the quest for a life with quality and joy. The approach is to deal with still “taboo” topics such as sexual choices in love, common fears and issues related to disclosure of different topics related with hemophilia or not! the book is about Communication 🙂
A very cool part of the booklet is that the illustrations are made by one young man who has severe hemophilia showing some of the best positions when having a sexual relation to avoid bleeding or pain and enjoy !
Estou muito feliz de anunciar que desde o lançamento do livro ‘Amor , Sexo y Comunicación” realizado em Buenos Aires muito se ha feito! o livro traz uma abordagem prática a partir da psicologia hospitalar, cognitiva comportamental e psicanalítica com depoimentos de profissionais como também dos própios portadores de hemofilia. Isso foi em 2011, de la para ca, a licenciada Irene Fuchs ha divulgado em numerosos workshops na America latina o livro! No ano passado meu colega do comitê psico-social da Federação Mundial de HEMOFILIA e atual vice presidente, Edward Kuebler, aceitou pôr as mãos na massa para a versão Inglesa !Para 2013-14 estaremos com publicações em Inglês para distribuir 🙂
O livro traz temas inéditos sobre o tema sexualidade: fases do desenvolvimento psicosexual, temas tabus, prevenção com a arte de se comunicar, e o melhor de tudo é que um paciente desenhista ilustrou algumas das melhores posições sexuais que são praticadas para evitar sangramentos ou driblar a dor em articulações.
Posted by frederica cassis on May 22, 2013 in CENTRO DE HEMOFILIA, DEPOIMENTOS DOS JOVENS, psychology, SEXUALITY, YOUNG MEN STORIES and tagged communication, Hemophilia and Sexuality, HEMOPHILIA CENTER HOSPITAL DAS CLINICAS, psychologist Frederica Cassis, psychologist Irene Fuchs, psychology and hemophilia, Sexualidade, SEXUALITY.
About frederica cassis
My name is Frederica Dillen CASSIS, born of a Belgium mother and an Egyptian father, on the 3rd of January 1966 in Brussels, Belgium.
I am back with news! life continues with its adventures...
I´ve travelled a lot, lived in many countries. Brazil is my seventh country and i live in Sao Paulo for 32 years now. Graduated in Clinical Psychology in
1991, I specialized in Junguian Psychology and in Hemophilia since then.
LATEST PROJECTS:
1) Launching IN-HEMOACTION flash cards, 2026 updated version where I added new topics like Inhibitors and novel treatments, physiotherapy and a some playful activities like video games!
2) HERO (Hemophilia Experiences Results and Opportunities) sponsored by Novo Nordisk since 2009-2014 Done !exploring through qualitative and quantitative analysis the psychosocial issues involving People with hemophilia, their carers and the health professionals in the treatment process.
2) P-TET (Pediatric Thrombosis Educational Tool) , for kids on anti-coagulant treatment...inspired on IN-HEMOACTION flashcards success.
3) I am a co-author along with psychologist Irene Fuchs and Edward Kuebler of a booklet called "Communication, love and sexuality for people with hemophilia, carriers and family"
4) Done: systematic review for the Cochrane Collaboration :"psychological interventions for people with hemophilia and their families"
5) Actually I counsel people who wants to perform as competition level athlete and collaborate with them seeking wellness and goals
On a more personal level I have 3 three great not anymore children :) Danaê 35, Rubi 29 and Iggy 27 and i am since 2019 a pole sport athlete at a national and international level. I love it! also To walk and look for shells on a beach and discovering deserts...:)
BLOOD 4 
Felicidades!!! dónde lo puedo conseguir??
LO! las copias en Español están con Irene Fuchs…me esperas hasta el año que viene ? risas
un beso grande!
Congratulations for the booklet. Is there a way to download it from the internet.
Dear Vaibhav,
I am working on the revision of the English translation , will peer review it and then I hope before July I will be able to send it for download.
Meanwhile could you tell me what interested you about the subject or why do you think it is important to have such topic written about?
it is just a way to interact more 🙂
best regards
frederica
Dear Frederica,
Being a young man with hemophilia (and coming from a country where sexuality is still a taboo subject), my interest in this topic is natural. I lead the local youth group in New Delhi and I feel that its important for young men with hemophilia to know about their sexuality. However as it is not an openly talked about topic in India, I feel a very strong need for such publications which can help in educating and initiating discussions about this topic.
During the last WFH congress, I saw you and Ed Kuebler give a presentation about sexuality. I really liked the way both of you spoke about the topic. Afterwards, attending SURO gave me a good chance to interact more with Ed. I am not a psycho-social expert, but I try to be as understanding and encouraging when discussing this topic with other young men who need information.
Hope to learn more from you. 🙂
Warm wishes,
Vaibhav
Dear Vaibhav,
I am really glad to receive this news from you. Be sure that for us, communicators and involved in psychosocial matters,facing challenges is part of the task. But we keep the motivation and the faith strong that we are doing what we should and what we can. Congratulations to you for your work!
So, I have good news: I am reviewing the English translation on more time (it was as you now first in Spanish and Brazilian Portuguese), I will have it peer reviewed and then be sure that you will receive the booklet.
I´ll be in touch with you through your personal e-mail .
I am in touch with Ed Kuebler,he is great!
My best wishes for a soon contact,
frederica
Parabéns Frederica!
Adorei a iniciativa, quando poderemos comprá-lo?
Grande abraço.
Daiane
Daiane! que alegria ver tua visita por aqui…. ainda no Brasil não sai, mas no congresso em Paris terei exemplares em Ingles..espero! 🙂