Danilo: Uma vida de constante superação
Autor: Ana Chagas | Publicado: 2014-04-15T20:48:00-07:00


Depoimento de um jovem afetado pela Síndrome de Machado Joseph




&nbsp;Olá, pessoal! Meu nome é Danilo, irei contar um pouco de mim
depois que comecei a ter sintomas.



A Ataxia MDJ SCA3 (Síndrome de Machado Joseph- Ataxia Espinocerebelar do tipo 3) começou a se manifestar afetando meu equilíbrio, em seguida, afetou minha voz, logo depois comecei a ter dificuldades de mobilidade; até que afetou minha coordenação motora; daí em diante comecei a fazer
as coisas de forma mais lenta.



Tive depressão no inicio da doença (Machado de 
Joseph); tudo isso foi um choque para mim, eu não aceitava ter esse 
problema, pois até então eu era normal e tinha uma vida normal.
Com o tempo tive que me acostumar, me adaptar e me aceitar...&nbsp;

Eu tinha 16 anos
no início dessa doença; hoje tenho 26 anos. Já são 10 Anos de superação.
Nesta situação o apoio da família tem sido fundamental; e até costumo dizer que o carinho deles me faz vencer uma batalha a cada
dia!




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Quanto à acessibilidade, moro em Votorantim/SP, e aqui muitos estabelecimentos comerciais não têm rampa, há muitas calçadas com
buraco, rampa do ônibus quando não funciona nós, cadeirantes, nos sentimos menosprezados pelos governantes, prefeit(a)os e vereadores. Mas quando tudo é
cumprido segundo a Lei, com acessibilidade, nos sentimos mais úteis e com mais liberdade para ir e vir. 






Minha
expectativa de vida, ou seja, minha meta hoje é VIVER! Enquanto eu tiver possibilidade de retardar
o processo dessa doença eu o farei! 

&nbsp;













Esta fotografia mostra o momento de um dos exames realizados para investigar a Síndrome. 















Danilo é meu sobrinho, e é assistido por especialistas no Hospital de Clínicas da Universidade Estadual de Campinas-
UNICAMP, e estão sendo testados nele alguns tratamentos de tecnologia importada.&nbsp; 



(Em breve acrescentarei a este Post mais detalhes do depoimento do Danilo, bem como o resultado que ele já experimenta após este tratamento e mais detalhes do mesmo. Aguardem). 





Este ao lado do Danilo é seu pai, José, meu irmão, o qual também é acometido da Síndrome. O José também tem sofrido muito por causa da degeneração do Sistema Nervoso Central acarretado pela Ataxia. Inclusive, a atrofia impediu a circulação sanguínea nos seus pés, e ele teve alguns dedos amputados, infelizmente.