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Roberto - United States
Living with Jarcho-Levin syndrome This is the story of Roberto "Papo" Lugo born August 21,1992 . My son Roberto just celebrated his 1 9th birthday this August 2011.We thank our mighty and awesome God everyday that we still have him in our lives.Roberto was born with Jarcho-Levin Syndrome. We were informed after he was born at 36 weeks by emergency "C-section" that he has Jarcho-Levin Syndrome....
Marta - Spain
Buenos días: Me presento mi nombre es Marta Fdez. De Gamboa soy la presidenta de la Asociación Nacional Amigos de Arnold Chiari. Cree en el 2003 esta asociación para ayudar  a más afectados. Poder i asesorarles y apoyarles. Otro de los motivos era dar a conocer a la sociedad médica esta patología La malformación de Chiari es una enfermedad catalogada como rara y altamente compleja.  La incidenci...
Shane - Australia
I have Stiff-Person Syndrome (SPS), a rare neurological disorder affecting about one in a million people. In 2006, I discovered I had a broken back, the cause a mystery. At the same time, I suddenly was racked with severe muscle spasms and seizures. After months in the hospital to fix my back, I was frightened that my back would break again from SPS. No longer able to work, SPS was taking my li...
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