Spastic Paraplegia is a group of genetic disorders characterized by progressive spasticity in the lower limbs.
Has anyone ever heard of or tried Noscapine as a potential treatment for HSP? The HSP research foundation in Australia said they will be conducting clinical trials on it as it may be able to help the progression of the disease. Please let me know. An article was written on the topic here
im 52 and was diagnosed in 2012 with FSP (familiar spastic paraperesis.) My mother spent much of her life in a wheel chair and wasn't diagnosed until I was diagnosed. I have a maternal aunt who shows symptoms and my grandmother and great grandmother also had symptoms but were not diagnosed.
i know this is a frustrating and painful disease. Anyone want to talk about it? What was your path to diagnosis? Any tips you've figured out for handling it? Any special FSP or HSP hacks?? Just need an outlet to complain? Hey - we all need to be able to complain and be angry at times. Go ahead and vent to those of us who understand. Any responses welcome!
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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