So saw a gentic councillor today for sca 6. She was very positive. Partner being diagnosed currently has no symptoms but runs in his family.
Told me if I wanted to try for another baby I should.
To live life for everyday .
Still don't no how to take this x x
Sounds like your session was positive and has left you with lots of food for thought.
I agree with the 'live life for every day ' advice - no one knows what the future holds for any family. It's good to think about the good things that life brings as well as the risks.
It's such a personal decision for you and your parter, I wish you all the best.
Xxx
Thank you hope I'm just so angry stil it's so rare how can this happen.
Going to try think positive from now on nothing I can do about it x
I really understand, I sometimes get so angry at how unfair it all is.
Xxx
Thank you for telling us about visit. Interesting to know what they said x
Thanks litty I still don't know how to take it tho. How much do gentic councillors know about sca 6 .
Will it be fair or selfish to bring a baby into the world who could possibly have sca knowing that I knew it could get it.
Me and my partner are starting to fall apart arguing all the time don't want ut to be this way .
Also I have really bad anxiety anyway x
It's exactly the same thought process I have. But I keep telling myself there are a million things we know could go wrong with or happen to a person any time from birth to death....just because you know of one specific risk all the other potential ones are still there....but we don't dwell on them?! My husband and I struggled with it for2 years....I think he thinks I have accepted there isn't going to be a baby two.....if only he knew it's still all I think about! X
Me too we both want one more and we both have same thought process as you. I keep thinking anything could happen . I think we probably will have another. And pray it gets normal gene x
It is so hard and very early days. It took us about a year to come to terms with the news. I am a crier too (my way of coping) which can drive my Ian mad!
Obviously it is a very personal and individual choice but if you can afford one shot at IVF and your husband is happy doing it too I would try.
I am sure the councillor knows their stuff but I would try to get your GP or neurologist to refer you to an Ataxia Centre (London, Sheffield and Newcastle) and they probably have or know people who know ataxias well. I have been going to London for about 15 years so I am on their books in case they find a treatment.
Thank you litty so much for all the advice. Think their is a newcastle ataxia centre somewhere . Will I have to get my partner to refer x
There's no way we could afford IVF but they haven't identified the faulty gene in my husband yet either so it wouldn't help us. . . . . . . Plus I'm nearly 38.....so time is not on our side! X
All I know really about sca 6 is that it is a late onset and my partners family been 60s.
We could try ivf but supposedly it's 1 on 3 couples take a baby hime it's what the genetics councellor told us.
Wish I could win the lottery this would be brilliant.
Hi Lola261184,
I have two children 29 and 23 and I was diagnosed 5 years and go through bouts of amongst other things worrying I may of passed on cerebellar ataxia, but mostly I am positive that there will be a cure or something to rid them of that gene in their future if not in mine. So I would go on and have a baby, you know how right and fulfilling it is. Whenever I feel really down and sad about my lot I am so happy to of been born. To be honest I think Trump is of more danger at this time!!!
Thank you I know what type have you got.
How have your children dealt with it ?
I'm such a worrier I think everything through x
Hi...just wondered how you are doing? I feel like I am ready to at least chat to my husband one last time and see if we can make a decision. Right now I am thinking we should go for baby 2 and worry about the rest if and when we have to! Things seem more positive now than they have in the 4 years since Ataxia high jacked our lives...I really think treatments...or even a cure. .. may not be too far away x X
At the moment I feel like im going to go for it my mind changes often tho. I've spoke to few ppl on here and hope and pray for a cure . I hope they will be lots of things in place by the time my little boys older eg treatments etc x
That's how I am ....I am a thinker and a worrier but ultimately we have to live for now ...... not the might happens! Good luck x
We should defo stay in touch . Have u got facebook.
My worry and anxiety drives me crazy . I worry all the time.
I wish I could put all my worry into a box. It's awful tho I worry about my little boy all the time anwhat's the right thing to do x
Yes I do....it's Eve Stanley......would love to stay in touch...lovely to have someone in an almost identical situation to 'compare notes' with! We are not very public about my husbands Ataxia though as we haven't discussed it with our boy or my step son yet....x
Same here we haven't really told anyone x
Lola hi,
Sorry this is late and maybe you have acted but maybe u have not! . Here, in Israel, there is a procedure in which the faulty gene is somehow removed from the fetus in utero. and the baby is born healthy. I saw this about 10 -15 years ago with my own eyes. I would imagine that by now, this treatment is availlable in the UK. Of course it involves IVF--free here if u have the criteria to become a citizen and if you qualify age wise for IVF. If this procedure is not done in the UK, maybe you can qualify under some humanitarian program. Good luck N
Thanks looked into this but because I already have a child who they class as a healthy child as he can't be tested til he's older i would have to pay 12000 pound. X it's so hard on what to do and even then it might not work first time.
I see you dilemma . Isn't there a sympathetic dr or geneticist or politician. I mean its a good question. What to do with late onset illnesses and diagnostics. Maybe they r concerned it will not show up now. Also, if I understood u correctly you and your spouse don't have this right now. But the would-be baby's paternal grandparents do.
Non Genetic Cerebellar Ataxia
A chance to take part in genetics research
Just got my genetic test results
The elephant in the room. We could end genetically inherited illness in this generation.
