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 me explain to you 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 hemarthrosis 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 in day basis is another reality.

Imagem 218It 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 aren’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 the  inner aspects of personality,     that claim for 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….BUT ALSO other feelings and attitudes can arise : let see what my center offers? what is hemophilia FOR ME? what can I do in my way of seeing 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:

 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 ones. 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)

And  with a Prevention Approach 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. tartaruga-lenta5

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.fotos-da-hemoflia-turquia-e-blog-009.jpg

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´ve travelled a lot, lived in many countries. Brazil is my seventh country and i live in Sao Paulo for 19 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, where I added new topics like Inhibitors and their different treatments, physiotherapy and a some playful activities like video games! 2) HERO (Hemophilia Experiences Results and Opportunities) sponsored by Novo Nordisk since 2009, exploring through qualitative and quantitative analysis the psychosocial issues involving People with hemophilia, their carers and the health professionals in the treatment process. check this project in my blog www.blood4.wordpress.com Now, HERO is in Brazil! soon the results will be available. 2) P-TET (Pediatric Thrombosis Educational Tool) flash cards in evolution stage, 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) an on going process of a systematic review for the Cochrane Collaboration about "psychological interventions for people with hemophilia and their families" On a more personal level i have 3 three great not anymore children :) Danaê 24, Rubi 18 and Iggy 15) and i love to jogg, dance and read. To walk and look for shells on a beach too and I discover that i love deserts...:)

2 responses »

  1. Liza says:

    My fellow on Orkut shared this link with me and I’m not dissapointed that I came to your blog.

  2. bleedingdisorder says:

    Great Post – Thank you for the insight.

    I have held onto a cartoon since I was in college that hold the same belief. “Quality of life is not only about material aspects but also about psychological ones.” I’ve chosen NOT to be a victim!

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