In 1996, I was 9. My aunt looked at me and said “you’re swollen!” My parents took me to a doctor and she said I had a heart issue and shall take medicine forever. I started “its” treatment and looked like a balloon, so swollen, white as snow and feeling bad, I was almost having a heart attack. We went to another doctor and he told us it was a wrong diagnosis and I could have died if I didn’t have immediate medical service. But he also found something strange, he thought he felt a tumor on my ovary and sent me to a hospital and in less then 24 hours I was being prepared for a surgery to take out a tumor.

That night everybody was freaking out and my parents had to sell their soul to pay hospital and “forget” all that negligence. But I was still swollen… Everyday, every afternoon I could see my clothes and shoes marking my skin. I started a new fight “what do I have?”

It was 11 years going to private and government doctors who had diagnosed as rheumatism, sclerosis, stress, allergy and many “I don’t know, you may go on….” Since they don’t know what it was most of them pretended to have an idea of what it would be. I’m from a poor family. My parents didn’t have money for all of this. My aunts and uncles (also poor) joined force to help us financially to go to all these wrong doctors. I was a long, expensive, exhausting and unhappy journey.

I was just a kid. I had always been different I didn’t know why and how. Kids usually looked at me like a stranger, my classmates too, my teachers, my colleagues at work (I felt bad many times and had to be absent with unknown explanation.. It almost cost me my career. It still almost costs me my career because what people don’t know, they ignore or they don’t believe/understand.

When I was 21 I was finally diagnosed with bilateral congenital lymphedema but again “you just need using compression socks, eat less and it doesn’t have a cure!” “what?” “It is not studied too much.”

Just this? So am I supposed to just accepting this and the end?! I can accept many things but I cannot accept so serious disease being so ignored! I cannot accept just this! I’ve been searching for a long time and I found an excellent doctor but I need to pay. What about those who cannot pay? Simply stop moving and die?! I’ve recently created the site www.pernasproar.blog.br where I try to explain lymphedema, give examples of treatments with lower cost, fashion tips, nutrition tips, exercises etc. I’m also writhing a book from patient perspective. (If you want to share your stories please contact me).

I’m really happy to see this site and found people like me, see your efforts and all this information. But my blog is just a start of this kind of progress in Brazil.