So I am in a 5 year study under Dr. LASPADA who is working on a treatment for SCA7. He has told me he plans on reversing what I have. My question is what do I do after I get treatment and be normal again? I have had to put my life on hold now I have to be a part of society again. Any thoughts?
That’s my desire! To be “normal”. As for anything else, I’ll work that out after I’m normal.
What is Dr. Laspada using to treat your SCA7 ? I have SCA 6 and just finished one year trial of BHV-4157 which did not show any significant benefit.
I do not know details I just know it’s an agent he will inject in the eye as well as the muscle. He just finished testing in mice with pretty good results.
I like using the word normal because people always say I’m still normal but there’s no way I am. I guess I should take it step by step. I just like planning.
OMG that sounds awful! Injection in the eye! Be careful.
I have thought about that, too. In my case it is lots of wishful thinking. If I were normal I would have so much more freedom. I could travel without worrying about how to get clean, I would drive and go wherever I wanted, when I wanted, I could use makeup and jewelry, I would carry a purse. I would be more independent.
When you know any details, please share with us if you can. 5 years trial appear to be a long time. But if it works, 5 years is worth the while.
I just read about Dr Albert La Spada, how he’s pursuing a promising treatment for SCA7, specifically to treat Retinal Degeneration. Is that the Study you’re referring to? It looks very promising xB
Yes that’s exactly right. Everyone’s very excited.
Is he still in San Diego, CA?
I’m not sure I think he moved
Is there any update on this procedure and the outcome…curious!
An update: My last year with the study will be 2020. I have not met with the main doctor running the show but the doctors working with him has assured me that things are happening. They say the cure is right around the corner. I will know more next year. Since I went through all the testing I will be able to get my hands on the cure/treatment.
Symptomatic relief can be achieved by modifying the abnormal proteins made by the mutant genes. I can see the race by different pharmaceuticals in various studies. True cure will only come when the mutant genes are replaced by healthy ones.
What treatment for SCA7? That is what I have!
Various therapies can help ease specific symptoms. And certain Medications are prescribed for specific symptoms. What are you looking for specifically
Treatment. Unfortunately, there is no cure for spinocerebellar ataxia 7 (SCA7). Management of affected individuals is generally supportive because there is currently no known treatment to delay or stop the progression of the disease.
https://rarediseases.info.nih.gov › sp…
Anything there is. This SCA7 is a killer! What do people do?
The majority of SCAs, and other Ataxias, are very challenging to live with, we know that at the moment there is no cure, but we all need to make life more bearable because it is a daily challenge.
I know SCA7 people are particularly prone to serious eye problems, I’ve had a taste of this myself, and sought advice from a NeuroOpthamologist. Due to your particular gene this may not help you, but it’s worth asking.
If you need help alleviating symptoms, you might find this list of medications helpful…https://aws1.discourse-cdn.com/standard10/uploads/ben_ataxia/original/2X/2/275f64ba023f4639f0474c217f6d9d2c582cf981.pdf
Thank you for the list of meds. I have been on Riluzole for two months with no results.