applepiippobee
06-07-2005, 10:24 AM
Hi:
I am new to this site I found in a local paper. I have a rare Neurogentic disease. Hereditary Spastic Paraparesis. I am always on the look out for sucess in treatments in other related diseases in the hope the effect may trickle over to help me and my family. I am under excellent medical care and my neuro. works in research, but I am always looking for something . . .if not for me then my kids. I am at the point where I needed a Baclofen pump to continue walking longer and I am under 45. I also have a few related problems. I would love to read articles or have information sent to me on My condtion when available. I know this disease is rarely seen, and my sister who is a physician terms it textbook because a neurologist will rarely see it much less a GP. I have children. It is autosomal dominant. I know one of my kids is affected . Mild-but no one can tell me what the future holds for my family or others with HSP. Thanks.
LAA
I am new to this site I found in a local paper. I have a rare Neurogentic disease. Hereditary Spastic Paraparesis. I am always on the look out for sucess in treatments in other related diseases in the hope the effect may trickle over to help me and my family. I am under excellent medical care and my neuro. works in research, but I am always looking for something . . .if not for me then my kids. I am at the point where I needed a Baclofen pump to continue walking longer and I am under 45. I also have a few related problems. I would love to read articles or have information sent to me on My condtion when available. I know this disease is rarely seen, and my sister who is a physician terms it textbook because a neurologist will rarely see it much less a GP. I have children. It is autosomal dominant. I know one of my kids is affected . Mild-but no one can tell me what the future holds for my family or others with HSP. Thanks.
LAA