Hello my name is Jim McLarty,I live in high point nc it’ near Winston-Salem my doctor is at wake forest hospital in w-s he is very knowledgeable about sca but I have asked him about my sca8 which they diagnosed about 15 years ago by blood test and he said he doesn’t know he has not seen a case of it before. So he can’t give me any insight,your daughter is the only other case I’ve seen can you tell me how she is doing what kind of symptoms is she having maybe we can compare what we are both going through. If you are worried I am a 67 year old who has been married 31 years and have 5 children and 5 grandchildren
Hi Jim. There aren’t to many cases out there. In California there is an ataxia clinic. There are probably around 6 others in the US. You might have to travel to speak to someone that knows more about SCA8. We are hopeful that the medicine that my daughter is in a clinical study is the answer. She, in my opinion seems better. Much happier and not so tired. Look up BHV 4157. This medicine should be out by 2018. She started showing symptoms at age 16 with head ticks. Neurologist told me she will grow out of them. We just got her diagnosed in April. (I am glad we didnt know her diagnoses then because I probably would not had let her drive or go away to college) She did however had to drop college because she had a bad episode where she could not walk at all and thats when we started investivating. Before we knew her diagnosis we did not know why she couldn’t throw a ball as straight as she use to or why I couldn’t understand what she was saying. Also, very slow moving almost her whole life. They say that the more this disease is passed down the younger the person will show symptoms. There are approximately 4 cases of SCA8 in the study. They are the harder ones to find for the study. I guess SCA3 is more common. We took a trip this weekend where she had to step onto a rocking boat and she did great. I really believe she is doing better, but she thinks I am on a placebo. lol, 21 year olds, go figure.
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Thanks for replying it sounds like your daughter is getting better, I hope so, she has her whole life ahead of her. I was a lot older when I was diagnosed and I resisted getting the blood test for a long time. The doctor told me there was no cure so I felt what good was it to know what type of sca I had.He finally convinced me by telling me my children might like to know. So far they haven’t been affected. But I feel my sca is progressing and I am not sure what I am in for in the future.
The usual time SCA8 shows is in the 50’s. I believe I am the carrier due to my mom talking about her grandmother who was wheelchair bound and they didn’t know why she progressively got worse with time. We are in an era where they can at least identify what gene is causing this and great things are happening with research. She goes to UCLA this Thursday to be evaluated. She has been in the study 4 weeks. 4 more weeks to go and they will then give her the real medicine and they will observe her progress then. Don’t give up hope. This medicine will be out in 2018. The FDA has put this on the fast track because there is no known cure or medicine for this, so this will be the first.
Hi. My daughter is in the 3rd phase of the study and is showing improvement. The FDA is waiting until 2018 to approve the meds or not. Well my daughter is proof and I hope they allow others to use this drug. Hopeful. Her SARA score (testing different functions) was at an 11 at the beginning of the test and her score is now a 2. Zero being perfect and no symptoms. She started the study in June. She is way more verbal and expresses herself so much better. She does suffer from depression but it was there before.
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Don’t get wet Macular Degeneration. Eye shots help it from getting worse many times
My 16 year old son, has SCA7. He was diagnosed by a neurologist in 2011 genetic test confirmed what the doctor suspected. I am looking for anything in any type of help because to me his condition is greatly degenerated. He played Little League baseball and football. Watching him go through this is very tough. Praying for anything. This is Delores
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Hi Delores, this must be one of most challenging things a parent can be faced with. Are other members of your family affected by SCA7, with specific eye problems 
xB
Hi Delores. My daughter is doing extremely well in the test drug as mentioned in the post above. Trigriluzole. I think I spelt it correctly. She moves so much better. She use to tick when she went to bed for about an hour which put so much strain on her neck now the ticking is down to 20 minutes. She is 21 years old and this illness set her back from enjoying different activities that a young girl should. Now she is enjoying life a lot more. She has sca8. She still exercises and tries to eat well. They haven’t approved the drug yet but hoping by 2018.
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You are right, this is one of the most challenging thing I have ever dealt with. I adoptaed my son at birth. According to the biological parents there is no history on either side. The biological father has 3 older children and reports no problems. The biological mother has no other children and reports no problem with other family members.
Ms, Cynthia thank you. I will check back on site more often.
Hi. My name is Piper and I live in Dallas, Texas. I have SCA 8. I was diagnosed in 2013. This is exciting news. There is nothing going on in Texas for SCA and especially SCA 8. Do you know if the medication is on the market yet?
I hope your daughter is continuing to progress with good results!
Thanks,
Piper
Hello, I am olfella and I live in N.C and was diagnosed by blood testing at Wake Forest in 2008 with sca8 my main problem seems to be my speech and swallowing, I am also hoping that things work out for Cynthia,s daughter.
Hi Olfella. Nice to meet you here. I’ve never met anyone else with SCA 8. I’ve been researching CRISPR Cas 9 genetic editing. I’m hoping this will be taking place in the near future. They are editing genes on cancer patients in China and there is a research study going on at University of Pennsylvania for cancer patients (I can’t remember the particular type). This could possibly be a cure for SCA. Good to know there may also be a medication to help while waiting on gene editing.
Warm regards,
Piper
Hi Piper. The study has 3 more months to go. My daughter is reacting well to the meds but it depends on the study as a whole. I am a little worried that the FDA will not see enough positive results to ok the medicine. I am saying my prayers for it to get approved. Hopefully one way or another we will get the meds. My daughter has improved and the last study the doctor says she is not getting worse but seems to be the same as the 3 months prior. If she does not get worse we will be happy. She is able to work part time and go to school part time. How old were you when your symptoms started? My daughter was about 16.
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Thank you Ofelia. I pray that this study helps others as well. We have 3 more months on the trial then FDA will let us know. 
Hi Cynthia,
I am the first person in my family diagnosed with SCA type 8. I started having symptoms at 53, mainly dizziness but was diagnosed at 55 when my balance issues were so bad I could barely walk. I cut literally cut out ALL foods that affected me and was able to work for four years with ataxia. I feel disappointed that the physicians are not seeing the results you are seeing in your daughter. How will you get the medication (“one way or another’)?
It is disconcerting when a drug that could help finally appears but the decision is in the researchers opinions. Are you able to talk with them regarding what you see as opposed to what the say they see?
Also, you have done your research so I’m sure you have heard of CRISPR cas9 genetic editing. They have edited genes on 86 patients in China, mainly cancer, HIV and sickle cell I believe.
There is a study at University of Pennsylvania for gene editing on a type of cancer. I can’t recall the particular type. I want you to have this information because it could be a cure.
Please let me know how you will get the Trigniluzole.
Warmly,
Piper
Hello again rufus526 I am sorry it took me so long to get back to you. I too once lived in Dallas, in fact l was born there. I was also diagnosed in my early fifties. The neurologist told me from my mri that I probably had it but I needed genetic testing to know for sure. I resisted for a few years and in 2008 I finally had the genetic test, and sure enough I have sca 8 he said that it might skip generations and I remember my grandmother in a wheelchair, but in those days they didn’t worry to much about a cause.
This is a little off the topic but I thought it should be included because you never know. I recently joined the Million Veteran’s Program [I’m a military veteran]. They are trying to see how genetic markers in the blood affect differently. I gave a tube of blood for them to run genetics. Plus, I filled out questionnaires. They are aware of my condition and they are going to pay good attention. It is all being done anonymously. I’ll keep you apprised when I learn something. However, I don’t think it will be soon.
It’s motivating to take part in research, you just never know how it will evolve 
xB