Esclerose lateral amiotrofica: a doença que preserva o essencial.



O astrofisico ingles, Stephen Hawking,  eh portador de esclerose lateral amiotrofica ( ELA ou ALS, em ingles )ha 45 anos,  mas a doença nao o impediu de publicar relevantes descobertas sobre o universo, especialmente sobre os buracos negros. Nem de ter filhos e levar uma vida quase normal. Comunica-se por meio de computador com sintetizador de voz.


Este artigo esta em ingles, porque foi publicado no site americano Patients Like Me. Trata-se de um site da maior relevancia, por reunir pacientes de varias patologias, agrupa-los, reuni-los com profissionais de saude e cientistas. Ainda, naturalmente, ha um forum de ricos compartilhamentos de ideias entre os participantes, chegando mesmo a debates vigorosos sobre tratamentos, perspectivas de cura, celulas-tronco etc.


Name:Jose Moacir Ferreira Leao

Male, 51 years


Goiania - GO  Condition Historyedit


Primary Condition:ALS (Amyotrophic lateral sclerosis)


First symptom:08/06


Diagnosis:may/07 Profile Activity  


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1 helpful mark About Me edit


 
 
Hello everyone. My name is Moacir. I am 51 years old, married to Angelica , and God has given us two wonderful children. We all live in Brazil. I will never forget the very day I couldn't open a bottle of wine- that day I left behind in September 2006. I only thought there was something wrong in my right hand. Little by little the things were getting heavier and more resistant to my efforts. Even my little baby managed to wrench his toys from my hand with no difficulty. Suddenly, I realized that it could be something far more serious, and I immediately made an appointment with the neurologist. By this way, after going through the underground of anxiety and depression, I finally faced the monster face to face- I found that soon I would no longer be able to walk, feed myself, and other atrocities. Yes, it's been stated that the monster may kill its victims in 3 to 5 years. Yes, there's no cure, everybody must take his placebo at an outrageous cost in order to retard the condemnatory sentence for a mere three months or so. Despite all dreadful things, I am in peace and I am confident. Great is God and endless is his kindness. The breakthrough is coming soon. For the first time, scientists show us a light of hope by the successful lithium trial in Italy, a famous study that made some people jealous (when will they ever learn that mice are mice and men are men...) while we, the real PALS, say: thank you so much.