Adult Onset Sandhoff's Disease

Posted By Tammy on September 22, 1998 at 23:55:19:







I was diagnosed approx. 2 years ago with Adult Onset Sandhoff's Disease.
I have been experiencing severe and progressive muscle weakness in my
legs and am beginning to experience weakness in my arms as well.  I understand what this disorder is and that there is are no known treatments at this time.  I am searching for anyone who has special training in this area
and who might know of any new therapies being attempted.  I would greatly
appreciate any information that you could provide.
                                                                  Thank you,
                                                                   Tammy