Notícias

mesadetrabalhoCampinas, Brazil.
March 26th, 2014.

Dear Cassidy Megan,

In this letter, I would like to tell you about Purple Day in my city, in Brazil. But, first, I shall tell you a bit about myself.
I had just graduated in Nursing and started my Masters in Neuroscience, when I was invited to be part of a volunteer organization in Epilepsy, called 'Assistência à Saúde do Paciente com Epilepsia' (ASPE). In English, it would be 'Healthcare Assistance to the Patient with Epilepsy'.
As a volunteer, I went to a very poor community in Brazil's countryside to talk about Epilepsy. There, people with Epilepsy amazed me with their willpower and strength to overcome so many barriers in life. I thought I would be teaching there, but I was the one learning. As a nurse and as a human being, I would do anything to break down these barriers. To knock out prejudice, fear, shame and solitude. I came back home with all these wishes in my mind.

The organization I told you about, ASPE, was created in 2002 with this same purpose. As part of a World Health Organization campaign called 'Epilepsy Out of Shadows', ASPE was founded to promote Epilepsy awareness in Brazil, starting at University of Campinas.
This year, the founding chairman of ASPE, Prof. Li Li Min, told me about you. A 9-years-old girl from Canada who stood up to talk about Epilepsy on the 26th of March. Then, he said, the color of lavender fields, purple, was chosen to represent this day, recalling the solitude faced by those with Epilepsy. And, by gathering to talk about it, we shall send this loneliness away!

I am happy to tell you that this day was all about purple and smiling people in Brazil. We started joining the ones with the same purpose: patients, healthcare professionals, students, reporters. Suddenly, Purple Day was all over the news. Through TV channels, several newspapers and magazines, social networks, all available through web, we invited people to wear purple and join us. We even gave our voice for the Purple Day and recorded a song about it. I hope you like it! Watch this video: ASPE Wears Purple, Sings Along and Stands for Epilepsy Awareness.

But, we wanted the whole University wearing purple. What about brightening it in purple? Lights of main centers in campus were covered in purple. Purple Day would last until night. Also, our ASPE president, Mrs. Isilda, decorated the Hospital entrance with purple fabrics and posters, while others, nurses, doctors and students were distributing purple ribbons, leaflets and informations.

Still, that wasn't enough. We wanted more noise. More purple. With a group of Medical students and with Alice, from ASPE, I simulated a seizure in the middle of the University restaurant. We did it during the busiest hour, lunchtime. I was afraid of performing it and I felt a great despair when pretending to lose control. Now, I understand a bit more of how difficulty a seizure can be. It was extremely important to have people I trusted by my side. By doing so, we were able to show to students how easily they could help and how naturally this situation should be seen. We definitely caught their attention. They had questions and they learnt about Epilepsy through our leaflets and our explanation. Other students were able to see it later on, when we released the video online, through social networks.

In the evening, our founding chairman released his new book on Neuroscience and Epilepsy during a nice and pleasant event. Much more was said and heard about Epilepsy. People were gathered, laughing and taking pictures together. The ones who posted pictures wearing purple on Facebook received a free copy of this book! 'Out of shadows', I may say, far from solitude. Purple Day extended throughout the night.

A dear friend of mine, who has Epilepsy, told me that she had never felt more welcome in life before. I didn't even know that she had Epilepsy. She was telling me for the first time, saying that we had no idea of how much it meant for her. I remembered of you, the reason why this beautiful day happened. Through this letter, I would like to congratulate you. Thank you for bringing so many people together. Thank you for allowing them to be heard, taken care of and, most important, to feel welcome as any of us should feel, every day. That Purple Day may be remembered and disseminated in all over the world. In Brazil, you can count on me and ASPE!

My best wishes and greatest admiration,

Gabriela Spagnol
Executive Secretary of ASPE
Master Student at School of Medical Sciences
University of Campinas – Brazil

 

 

 

 

 

 

 

Quem somos

A epilepsia é a condição neurológica crônica mais comum em todo o mundo e afeta todas as idades, raças e classes sociais. Impõe um peso grande nas áreas psicológica, física, social e econômica, revelando dificuldades não só individuais, mas também familiares, escolares e sociais, especialmente devido ao desconhecimento, crenças, medo e estigma.

SAIBA MAIS!