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United for the cause: Brazilian EB groups grow together as a DEBRA

In October 2013, the first Southbrazilian EB Symposium took place in Blumenau, Brazil. It brought together people from four patient support groups working for people with EB. They have now concluded to continue as one united DEBRA Brazil.

The first Southbrazilian EB Symposium took place on October 25-26 and brought together more than 90 people - patients, families and staff - from four different Brazilian EB support groups. A fifth, SOSEB, was invited but delegates were unable to participate this time.

EB patient groups active in Brazil

  • APPEB (Brasília – Federal District)
  • AMPAPEB (Belo Horizonte - Minas Gerais)
  • AFAPEB (Salvador - Bahia)
  • SOSEB (São Paulo - São Paulo)
  • ACPAPEB (Blumenau - Santa Catarina)

The opening ceremony included performances of two EB patients: Emanuel playing the Irlandaise by Claude Bolling on the metalophone and Ingrid Vitória saying a little prayer.

In the course of the two days, very interesting lectures were held by

  • Dr. Maria Aparecida de Faria Grossi (dermatologist)
  • Dr. Jeanine Magno Frantz (pediatric dermatologist)
  • Dr. Simone Mueler (pediatrist)
  • Catia Augusta Dias (nurse)
  • Márcia Carvalho (psychologist)
  • Flávia Santos Beaumord (psychologist)
  • Dr. Jocimeiry Schroh (lawyer)
  • Dr. Yvette de Montreuil (orthodontist)
  • Dr. Priscila Matsumoto Martin (biomedical expert)
  • Dr. José Alexandre Reale Pereira (orthopedist)
  • Mônica Weiller Ceccato (physiotherapist)
  • Dr. Maura Milano (hyperbaric oxygen therapy - HBOT)
  • Dr. Roberto Zilio (gastroenterologist)
  • Lenara Pereira Correa (Professor, Colégio Shalom)
  • Wagner Vieira (Professor, Colégio Shalom)

Anna Carolina Rocha, daughter of the president of APPEB, Iolanda Ferreira, and EB patient herself, truly delighted us all with a belly dance performance on the afternoon of the 25th. On the evening of the same day we offered a dinner party to the people involved in the symposium.

We opened the second meeting day, October 26th, with a video, which I had produced myself using a well-known local samba song and pictures of EB patients. I chose this song because of its lyrics that say:

"To live and not be ashamed of feeling happy
To sing and sing and sing
The beauty of being an eternal apprentice
I know that life should be better and it will be
But this doesn’t stop me from repeating:
It's beautiful, it's beautiful and its beautiful"

And at the end of the second day, after the lecture of Anna Carolina talking about her life experience as an EB patient, we heard the local band "The Zorden". They sang a song for us called "Pra te encontrar" (To find you) which tells the story of someone who would drive, fly, even travel in time or fight lions to find the beloved person. I can see each and every one of us in this song when it comes to the quest for a cure for EB. We will do anything to get there!

At the end of the symposium, we all left very pleased, full of new experiences and knowledge, with any doubts cleared, and our batteries recharged.

We have grown together in these two days, and our commitment to improve the lives of people with EB in Brazil is enormous. We hope to announce the official registration of our brand-new DEBRA Brazil by March 2014.

Group picture of delegates from 4 Brazilian EB patient groups