Question

[weegiz12345]

Hi everyone quick question I’ve got SCA2 and am 58. My son thinks he has ataxia, he’s 38. I have a 1in 2 chance of passing ataxia on to him. Will he get the same type as me? He’s going to be tested. Any advice is gratefully received.

Louise

[Jenandbeth]

My understanding is that each SCA is due to the mutation of a specific gene, my daughter's is a mutation of KCND3 gene. She has inherited this specific gene mutation from her dad who in turn inherited it from his mum. If your son has inherited it from you, he will have a mutation on the same gene, and that would be be the gene associated with SCA2. That said my daughter also has a mutation on another ataxia gene, but she did not inherit that, some folk just develop gene mutations and it's not recognisably inherited. Her formal diagnosis has gone with the clearly inherited gene so they all have SCA 19. Hope this helps. There's info about all of this on ataxia uk website and you should be able to google SCA 2 and find which gene is associated x

[weegiz12345 in reply to Jenandbeth]

Thanks for your reply much appreciated 😀

[RachelD84]

Morning, My husband also has SCA2, he inherited it from his mother as did his sister - so if your son has Ataxia its most likely to be the same x

[weegiz12345 in reply to RachelD84]

Thanks for reply, at least he can have some idea what to expect although everyone's affected differently.

[Ginger12]

From my understanding the chances are he could have inherited the same mutation of gene & have sca 2 but who knows if he has another mutation? If he's being tested it should determine.

Inherited & genetic can overlap but aren't always the same thing.

Best of luck 😄

[weegiz12345 in reply to Ginger12]

Thanks for the info

[FFNick]

My SCA is inherited and tested with a blood test.

Fortunately I have not passed it on as no children.

[weegiz12345]

Thanks for your reply.

[Hidden]

Yes, me and my mom both have SCA2 as well as others in our extended family. The one good thing about it is that a parental family history will make diagnoses a lot faster and easier.

[weegiz12345]

Thanks for your reply, good to know.

[Litty]

Deciding to be tested is VERY hard.

OK I will tell you my rather long story. I have SCA1. Like you we had a 50% chance of inheriting the faulty gene.

My Dad had SCA1 too and everyone thought he had had a stroke but a doctor friend of my sister though it was more so they tested him (SCA1 was the first type they found so number 1). My dad had 3 daughters and we were all offered testing. We all wanted different things - I needed to know (because I already had 2 children and was thinking about a 3rd). After counselling I was told I had inherited Dad’s gene and would get ataxia, so I was sterilised. My oldest sister thought me terrible and did not want to be tested (she has since developed ataxia and died). My other sister also had a young family and was tested. She is OK but I found this so hard. Luckily for my crazy head her husband suddenly died.

Everyone has a different way of telling their babies. Our 2 unfortunately growing-up knowing they may be wobbly like Grandad (I was his carer and he was living next-door) or Mummy. Our GP told me that ataxia for me was a shock. It is so hard telling your babies and very stressful. Our son was tested just before he was getting married and he does not have my faulty gene. My daughter is about to start her family so was tested. She unfortunately has my faulty gene. They have been offered genetic testing with IVF. This they are just starting.

Good luck xx

[weegiz12345 in reply to Litty]

Hi Litty I only found out I had ataxia about 10 years ago so already had my sons. Looking back we think I got it from my grandma but she just thought it was old age. Her daughters didn't get it one being my mum so it missed a generation. I have ended up with it and now my son feels something is not right.My other son feels he's ok. When I first told my kids I had it they were both not bothered but now bacause my son who thinks he has it rides a bike. he says if he has it he'll stop riding(for his and other drivers sakes). He seems to think if he has it he'll be fine but as you know it's a weight on you. In your experience does ataxia sometimes skip generations? If so and my son doesn't have it could it pass to his boys.I hope my sons doesn't have it or his sons.

Louise

[Litty in reply to weegiz12345]

I really thought that when gone that is it - I asked my sister who is a doctor and she said

'It's an autosomal dominant gene which means if it's there it WILL

So if a whole generation is free by the age that parents had it

show, then IT'S GONE’ xx

[weegiz12345 in reply to Litty]

Thanks for this.

[Hidden in reply to weegiz12345]

It really depends on which kind it is. Different types are caused by different genes. If it’s a dominant genes (like SCA2) you will develop ataxia. If it’s a recessive gene you may or may not develop ataxia if you have the gene but can still pass it down.

[weegiz12345 in reply to Hidden]

Thanks i now understand about genes a bit more

[Ayeshaabeer20 in reply to Hidden]

My Dad has SCA7 and i got it from him when i was 18. In my case its all genetic

[auntiesally]

I have sca2 inheirated, like you I have 2 sons, our eldest son had the genectic bloodtest, and am so reieved he des not have it and so has been assured his son will not have it, this does not mean our other son (he does not want to be tested) will. When he went for his results, it was all explained to him, I cried with relief, I know this is not my fault but feel so guilty at times, personally I do not think any doctor (unless an ataxia specialst) is any good, as they lack knowledge about ataxia, get in touch with ataxia uk

[Ayeshaabeer20 in reply to auntiesally]

Hey can you tell me about gene, when do the reports come. I had it on 7Feb, till now waiting.

[auntiesally in reply to Ayeshaabeer20]

It takes about 6 months to get the results, the gene is a hard one to decribe to you, but here goes, imagine all your genes are abcdabcdabcd, then abdeabde, or acbbd etc, that shows you have a faulty gene, your siblings may have is also, I am not an expert and do not reccomend my answer, only a geneist can explain this, if you have the gene, there is nothing you can do about it, I so hope you have not passed it on, do not punish yourself

[Ayeshaabeer20 in reply to auntiesally]

Umm thankyou so much but its not my fault i have it my father has S A7 for 10yrs and i have for two years when i was 18, both of us sisters had this test now were praying that i dont have type 7 because its slow death.

[auntiesally in reply to Ayeshaabeer20]

well, you could saythat, but you could say we are all facing a slow death from the day we were born,

[Ayeshaabeer20 in reply to auntiesally]

Ohhh thats a vvery consoling line 🤩 i m obliged

[weegiz12345]

I agree with you about different doctors. I'm lucky all the doctors I've seen have been ataxia ones. If your eldest son tested negative does this mean his sons won't get it? I understand feeling guilty too I will feel terrible if my son has it. I got it from my grandma although I don't blame my mum in the slightest. It's just the luck of the draw.

[auntiesally in reply to weegiz12345]

No his son will not get it , he has been assured that, also if he were to have any more children, they would not be effected