Sca 5

Hi! I'm new to this and Ive recently found out at the age 25, I have SCA 5. And I'm slowing finding out that it seems like it is a rarer type then most, and I'm just curious if there is anyone else out there with it too.. I would just like to know more about it and if there are any found medicines? or how to coup with this other then just doing physically therapy and to exercise at the gym daily?..

Hi Duck Hunter:-)



According to www.orpha.net SCA5 is autosomal dominant, and a rare subtype of autosomal dominant SCA3 (ADCA type3). It’s characterized by early onset of Cerebellar signs with eye movement abnormalities and a very slow disease progression.



SCA5 is caused by mutations in the SPTBN2 gene (11q13.2) encoding beta-111 spectrin, a protein essential for correct functioning and development of Purkinje cells.



SCA5 is inherited autosomal dominantly and genetic counseling is possible.



Log onto www.ataxia.org the National Ataxia Foundation home page.



Click on 1st box - Learn See - download our Ataxia Fact Sheets



Examples - fact sheets relating to various Ataxia’s but not 5

coordinative physiotherapy

medications for ataxia symptoms

Gene testing for hereditary Ataxia’s (SCA5 IS MENTIONED)



Physical therapy, and keeping your mind active are two very useful means of coping. There is nothing in the way of medication specifically for ataxia. There is no cure for the hereditary Ataxia’s. Symptoms can benefit from medication and therapies.



There are often requests for Patient Recruitment for Ataxia Clinical Trials, see info on www.ninds.nih.gov/disorders/ataxia



Hope this is useful :slight_smile: xB

Also see - www.ataxiacenter.umn.edu/aboutataxia/hereditary/sca/home.html
The University of Minnesota Ataxia Center currently lists information on SCA1-SCA32.
SCA5 is included.

Hi Duck Hunter and welcome -

You will find ALL ataxias are incurable, gives you whatever symptoms it wants and progresses at whatever rate it wants. There are no 2 people even within the same CSA type that have the same symptoms or progress at same rate.

There are only meds to treat the symptoms not the disease.

Moving seems to help. Do,whatever works for you. Running, walking, yoga, pilates, swimming, machines, hiking, biking. machines, going to physical therapy and/or occupational therapy.