Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Spastic Paraplegia

What is Spastic Paraplegia?

Spastic Paraplegia is a group of genetic disorders characterized by progressive spasticity in the lower limbs.

 

Spastic Paraplegia is a group of genetic disorders characterized by progressive spasticity in the lower limbs.
Acknowledgement of Spastic Paraplegia has not been added yet.
5.0http://www.orpha.net
Synonyms for Spastic Paraplegia has not been added yet.
Cause of Spastic Paraplegia has not been added yet.
Symptoms for Spastic Paraplegia has not been added yet.
Diagnosis of Spastic Paraplegia has not been added yet.
Diagnostic tests of Spastic Paraplegia has not been added yet
Treatments of Spastic Paraplegia has not been added yet.
Prognosis of Spastic Paraplegia has not been added yet.
Tips or Suggestions of Spastic Paraplegia has not been added yet.
References of Spastic Paraplegia has not been added yet.
Anyone want to talk about FSP? Created by Krialk
Last updated 5 Jan 2020, 08:06 AM

Posted by Felicity1980
5 Jan 2020, 08:06 AM

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 

 https://medium.com/@buyldn.com/hereditary-spastic-paraplegia-otherwise-known-as-hsp-is-a-genetic-neurological-disorder-that-b6b2477252ed?source=friends_link&sk=792e5e132fff75d74eb369ab1f0eec5f

Posted by Krialk
10 Dec 2019, 09:23 PM

Hi,

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!

Community External News Link
Title Date Link
Toronto family of child with ultra-rare disease urges public to take COVID-19 seriously 03/28/2020
Gaining insights into spastic paraplegia 08/07/2022
Community Resources
Title Description Date Link

Clinical Trials


Cords registry

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.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

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.

Community Leaders

 

Expert Questions

Ask a question

Community User List

I'm 46 and just recently diagnosed by some wonderful neurologists at Stanford University Hospital after years of doctors telling me there was nothing wrong with me, that I just needed to see a...
I have SPG 15. Was orginally dignosed as atypical cerebral palsy until i had an sister born with the same thing. Then they ran tests and then rediagnosed it.
Hi there. I am a happy mother of one 9 month old son, and have a wonderful husband. I have had SP for 16 years and diagnosed at age 19. I have gone through the ups and downs of this disorder but it...
Retired since 2004 on SSDI and enjoying my life in beautiful New England. I am a disability rights' volunteer and support group leader for NAMI - National Alliance on Mental Illness and for the...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Anyone want to talk about FSP?

Created by Krialk | Last updated 5 Jan 2020, 08:06 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.