Sinais que importam
Sinais que importam
Sinais que importam
Sinais que importam

Welcome to the new portal of United for Life – the Brazilian Institute for Attention to Cystic Fibrosis!

Who are we? We are a social organization based in Curitiba, Brazil and our mission is to make Cystic Fibrosis known in Brazil, contributing to the search for an early diagnosis, adequate treatment and improvement in quality of life. Our purpose is to reduce precocious mortality resulted from Cystic Fibrosis.

What do we do? We have developed projects and actions all over the country, among those are the:

  • Communication and Support Program:Within the program there are projects that aim to disseminate adequate information about CF throughout Brazil and to provide support to those who need assistance after the diagnosis. We maintain Brazil’s main Cystic Fibrosis social media outlets and portal updated daily.
  • Education and Research Program: We run projects that aim to include students and health professionals in the pathological concept, in addition to stimulate research in Brazil. We want health professionals to be able to identify CF!
  • Physical Activity Incentive Program: We want to stimulate the practice of responsible physical activity, aiming to improve the quality of life of those with Cystic Fibrosis. Everyone needs physical activity, especially those with CF!
  • Organizational Development Program:We develop projects that aim to foster the Cystic Fibrosis ecosystem in Brazil, through the training of CF institutions and associations in Brazil.

Our story:

Words from our Founder, Verônica Stasiak Bednarczuk de Oliveira, 30, a psychologist, diagnosed with CF at age 23.

We are a social organization based in Brazil, and we were born in October 2009, when, at the age of 23, I, the founder, was diagnosed for Cystic Fibrosis after cumulative health problems throughout my life. Since I was a child, I‘ve had various pneumonias, extracted two parts of my right lung, the gallbladder, and had part of my pancreas suffer from necrosis. After a severe pneumonia, that resulted in a 2 month hospitalization, I met a doctor, my guardian Angel Dr. Marlus, who suspected that I had Cystic Fibrosis.

During this same hospitalization, I dreamed I founded a group to assist people with respiratory problems. In this dream, I was under a tree, in a beautiful green field, and I was talking to people around me about the importance we should give to the air we breathe and how unfortunate it is that we only value it after we depend on a machine to breathe. When I woke up, I wrote the dream down and was determined to start a project to bring people with respiratory problems together in order to understand what we could do to improve the quality of our lives.

However, a month later, I received the diagnosis for Cystic Fibrosis. I began to study what the disease was, and noticed that all health problems I’ve had until then could have been avoided if I had received proper diagnosis and treatment. I could only think of how many people were and still are suffering like I was. In this moment I decided to combine the dream, my background in Psychology, my work experience, and my late diagnosis to found, in October 2009, the “United for Life Group“.

Approximately two years later, in November 2011, we held our Constituent Assembly and officially founded the United for Life Institute, thanks to the unconditional trust and support of incredible people: the Bernhoeft Family and the Generation Transition and History Living Institute of Brazil.

Our main mission is to make the disease known in Brazil, contributing to the search for early diagnosis, adequate treatment and improvement in quality of life. Between 2011 and 2017, thousands of people came to know Cystic Fibrosis through the development of our projects, linked to awareness, support, education and encouragement of physical activity. But we want to do more and better. Because we have identified many other demands, we are repositioning ourselves so that we can deliver our results with more quality, and to more people.

Now, in addition to all the projects we already do and will continue to do, we are now United for Life – the Brazilian Institute for attention to Cystic Fibrosis. In addition to the projects developed in the programs of Communication & Support, Education & Research and Incentive to the Practice of Physical Activity, we started the Organizational Development axis, considering the strengthening of the ecosystem of Cystic Fibrosis in Brazil, especially in the professionalization of associations that already work with it, as well as acting with Advocacy and Attendance.

Lastly, attention to us is to bestow care and care with goodwill.
It is to be attentive globally to the theme, acting strongly in favor of its advance.
It is to assist those who need help, and to provide it with affection at any time.
It is being willing to listen to the other’s anguish and gentleness to soothe and guide you.
It is to understand everything that needs to be improved and to not measure efforts for it, always executing everything with transparency and professionalism.
It is to always remain united for many lives, seeking the best for everyone with transparency, ethics and attention!

Come to the Institute United for Life!
Feel at home and always count on us!

Sincerely,

Veronica Stasiak Bednarczuk de Oliveira
Founder and General Director
Contact: veronica@unidospelavida.org.br

Why we exist:

We believe that knowing what you have can change everything! Therefore, we work hard to make people aware of Cystic Fibrosis, so that one can be diagnosed as early as possible, in order to receive proper treatment and that people with Cystic Fibrosis can enjoy a much better quality of life!

In addition, did you know that:

  • Among rare diseases, Cystic Fibrosis is one of the most common?
  • That it is genetic and still has no cure? It is considered an autosomal (affecting both men and women) and a recessive disease (in order to have it, one must inherit a CF gene from the father and one from the mother);
  • Its main symptoms are pneumonia, diarrhea, nasal polyps, sweat saltier than normal, chronic coughs, and that unfortunately it can be mistaken for several other diseases, precisely because people do not know it?
  • Pneumonia and diarrhea, two of the main symptoms of CF, are causes of child mortality according to UNICEF!
  • It is estimated that there are between 70,000 and 100,000 people with CF worldwide, but it is difficult to state an accurate figure as people with CF in countries without developed healthcare die before diagnosis .
  • In the US and UK, average life expectancy is 35 to 40 years old. In countries such as El Salvador, India and Bulgaria, life expectancy drops to below 15.

It is because of this and many other reasons that CF needs to be better known to all of us and diagnosed early!

Watch out for signs that matter, know the signs of Cystic Fibrosis and share this information!

Our website: www.unidospelavida.org.br (Only in Portuguese)


1: Brazilian Registry of Cystic Fibrosis – 2014. Brazilian Group of Studies on Cystic Fibrosis. Available at: http://portalgbefc.org.br/wp-content/uploads/2016/11/Registro2014_v09.pdf]
2: Salmo Raskin, Brazil
3: “What is Cystic Fibrosis.” Cystic Fibrosis Worldwide. N.p., n.d. Web. 12 July 2017.

Symptoms

Chronic coughs

Chronic coughs

Are you familiar with those coughs that won't go away, generally extremely loaded? Pay attention if it is too frequent!

Difficulty in gaining weight and stature

Difficulty in gaining weight and stature

Beware if you are eating a lot and are not gaining weight and stature predicted by your age.

Diarrhea

Diarrhea

It generally happens right after eating. In babies, for example, diapers appear to have a “greasy aspect” on them.

Sweat saltier than normal

Sweat saltier than normal

Do you taste a saltier skin, after kissing someone you love? Watch out for this sign!

Telefone+55 (41) 3114-7750
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