When I am dancing I feel free

01/03/2017
Historias de pacientes

I look healthy, so it might be hard for some people to believe that I have a disorder that impairs my immune system. It means I have a propensity to contract diseases more easily.

My first pneumonia crisis was when I was six years old, and throughout my childhood I was frequently hospitalised with pneumonia. When I was 13 years old my condition worsened. The air sacs of my lung had become inflamed and filled up with fluid, which is known as “water on the lungs”. I had to have this fluid removed, and this happened many times over the next five years. Eventually when I was 18 years old I had to have one of my lungs removed.

When I was a child my mother and the doctor recommended that I start to do something to increase my lung oxidation. I started to play “capoeira”, which is a Brazilian martial art that combines fighting, acrobatics, music and dance. I loved it, but after my lung was extracted I had to stop. I needed to look for another sport, and that’s when I learned to street dance.

At 34 years old I had the worst pneumonia crisis in my life. I couldn’t breathe – that’s the worst sensation you can have. It was nerve racking – I thought I was going to die.

If I met a plasma donor I would thank them and ask them if they know how much their act of giving is transforming people’s lives such as mine.

Through this difficult time my greatest objective was to stay alive, and to get through this time and go on to complete a dance performance. Through these challenging years, my greatest supports have been my pulmonologist, the São Paulo Hospital, my mother and my wife.

My pulmonologist referred me to a specialist at São Paulo Hospital and at 35 years old I was eventually diagnosed with common variable immunodeficiency (CVID). The doctor told me there was no cure and I would have to live with this my entire life. I was scared, but also happy to have the answer after living with the condition for so long.

My family were also relieved to hear the diagnosis – they had been very worried about me and were tired. My condition had impacted on my family throughout my life. My mother, and later my wife, couldn’t work because they had to take me to hospital or take care of me at home. They lost their days with me at hospital.

Of course it is difficult to live with the knowledge that there is no cure for my disease. But when I was diagnosed I was reassured to know that finally I would have treatment. Since I started on intravenous immunoglobulin treatment seven years ago I have not been admitted into hospital again. Now the medication allows me to do everything that I want. I started capoeira again, but I know my limits. I feel that I have been granted another life.

I have immunotherapy with Octapharma's human normal immunoglobulin solution every month. With immunotherapy I live better and I can live like a true human. I see myself as having two lives: life before and life after immunoglobulin treatment. My advice to someone newly diagnosed with CVID would be: don’t worry, immunotherapy will make you feel better because immunoglobulin is life.

Now the medication allows me to do everything that I want. I feel that I have been granted another life.

My greatest passion is dancing because it really boosts my life. When I am dancing I feel a mixture of emotions: happiness, anxiety, expectation. Adrenalin courses through my body. When I am dancing all of my body moves, and now I am 42 years old each year brings a different challenge. My body doesn’t respond in the same way it used to when I was younger. Street dancing needs physical strength. To maintain my physical condition I exercise regularly. I love to dance because I can meet my friends and can do a job that I like. My CVID introduced me to dancing – perhaps without this condition I would not be a street dance teacher today. What I enjoy most about street dancing is learning the choreography and then teaching it to my students. When I am dancing I forget everything. I feel free.

If I met a plasma donor I would thank them and ask them if they know how much their act of giving is transforming people’s lives such as mine.

With immunotherapy, I feel like I am living another life.

Keywords

Reporte anual

Enfermedades y terapias

Inmunología