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Ataxia Support Network

Stressed about the future


#1

Hello. My name is Cherry and I’m 23 years old. My father passed away almost 3 years ago at the age of 70. He had lived spinocerebllar ataxia for as long as I can remember. We were a little estranged so I knew very little about his condition. When he passed away I finally knew what the disease was called cause it was on his death certificate. After a bit of research I’ve finally decided that I want to do genetic testing to see if I do have the illness. 2 out of 3 of my dad’s siblings had it, including himself. And so far my half brother , who is about 40 years old I think has begun showing symptoms. I just wanna know so I can plan a bit for my future family. But because I know very little about my dad’s disease I don’t know what type it is. Does anyone have any tips on what I should do and who should I talk to?


#2

Try -
https://spinocerebellarataxia.org


#3

Hi Cherry,
I can understand your predicament. I can only tell you about SCA-6. The family letter on my genetic testing results is attached. I redacted my last Name. Hopefully, this will help you shed some light on Hereditary Spino-Cerebellar Ataxia and it’s effect on offsprings and siblings.Genetic Family Letter Name Redacted.pdf (2.0 MB)
Good luck to you.


#4

Hello, I have sca8 the only way that you can know for sure if you have sca, is to have genetic testing. Which is no big deal( they draw blood) after l had the genetic testing he then revered me to a genetic counselor who gave me a lesson in genetics. Know I understand (kind of ) what’s going on although there is no cure.


#5

Hi Cherry, welcome🙂 By far the best way to approach this is to make an appointment with a Neurologist, and preferably one who specialises in Ataxia. I live in the UK, our NHS system commonly requires referral by a GP. In the US, there’s a list of recommended Neurologists on www.ataxia.org So, obviously it depends very much on where you actually live, as to how you go about this. I can see you live in Australia, your healthcare system is probably different again.

Another online Ataxia Support Group that is likely to be more helpful because of where you live, is on Facebook. Two of the Moderators live in Australia, and have Ataxia themselves, they are well familiar with your Healthcare System. :slightly_smiling_face: Log onto Facebook and search for ‘Spinocerebellar Ataxia Awareness and Research Support Group’. I’m a member myself, and can vouch for the group, and the Moderators :slightly_smiling_face:

There are many different genetic types of Ataxia, and it can be a laborious journey when the specific type is initially in question, as it appears to be in your Fathers case (just - Spinocerebellar Ataxia). Commonly the different genetic types are given numbers, this corresponds to the order in which they’re ‘discovered’ and relates to the specific mutant gene. If the type in question is known, a blood test can confirm the diagnosis. This would be made a simpler process for you if your Half Brother had already been tested and found positive for a specific type. You should bear in mind, since at the moment you aren’t experiencing symptoms, and even if the test result is positive you may not have any symptoms until middle age… Once a person is diagnosed and found positive, this diagnosis may have to be disclosed in certain circumstances, for example it could effect the cost of insurance etc :thinking:

You’ll probably benefit from discussing this request for testing with your family doctor. But don’t be put off if he or she hasn’t heard of Spinocerebellar Ataxia, the condition itself is rare, and some doctors never come across it.

I hope this information is helpful :slightly_smiling_face: xB