Pregnancy

[Mirabella113]

Hi, I was diagnosed with SCA1 in 2011. I don't have any symptoms yet. My dad had it (he died last year, he was 67) and my sister (she is 40 and mostly dependant of our mum). I wanted to ask if anyone has been pregnant while having Ataxia. I'm worrying that it could make the illness worse.

[kezbull]

I'm 36 and I have FA. I have 2 daughters 12 & 5. Not sure if it made symptoms worse or not thoufh

[Mirabella113 in reply to kezbull]

Thank you.

[wobblybee in reply to Mirabella113]

Hi Mirabella😊

Are you already pregnant? 😊xB

[Mirabella113 in reply to wobblybee]

No, not yet.

[HarryB Administrator]

Hi Mirabella113

Thanks for your question. I don't know if pregnancy would expedite your symptoms. Hopefully someone on this forum will be able to help on that score. You should also discuss it with your own doctor. I am reasonably sure they won't know the answer to this in which case you should ask to speak to a neurologist, preferably someone with an expertise in ataxia. You can get a list of such clinicians from the Ataxia UK website ataxia.org.uk, going to the Ataxia drop-down menu on the homepage, clicking on Ataxia Centres at the bottom of the list and then going to the first 'click here'

If you decide to try and get pregnant I would strongly advise you speak to a genetic counsellor first.

Good Luck!

Best wishes

Harriet

[Mirabella113 in reply to HarryB]

Thank you for that answer. I have spoke with all different doctors, nurses and counsellors. Believe me I know everything from the "technical " side. Just thought that someone else is in my position.

[wobblybee in reply to Mirabella113]

Hi😊

You could log onto ataxia.org Living with Ataxia.

Put 'pregnancy and ataxia' in the search box and you'll find discussions on the subject.

😊xB

[Mirabella113 in reply to wobblybee]

Thank you.

[wobblybee in reply to Mirabella113]

You're not alone with this dilemma. 😊xB

[Loubie82]

Hi mirabella113

I have 2 children 9&10 and I was diagnosed. When I was 19 and I was fine throughout both pregnancies xx

[Caraxxo]

Hiya I have spinocerebella ataxia type 2 and awaiting IVF/PGD as referred by my genetics doctor

[Mirabella113 in reply to Caraxxo]

I would rather get pregnant naturally and then in the 11th week you can check if the baby is healthy.

[Caraxxo in reply to Mirabella113]

That gives you a chance of a miscarriage, only small but just letting u know 😊

[Mirabella113 in reply to Caraxxo]

Well if my baby will be ill I can try again.

[Jujubeelu in reply to Mirabella113]

Hi. Can I message you in private about this?

[neta]

Hi there "Mirabella"

All good advice here. If I could just add: MS sufferers have reported that pregnancy often inhibits the disease totally. I know that CA ha s been compared to MS. N

[Mirabella113 in reply to neta]

That's good news.

[isabelalfaiate]

Hi, I have inherited ataxia from my father, My neurologist says it is a faulty chromosome which was passed to me, I have two sisters who did not inherit this chromosome and as such their descendants are free, but my son could also have the disease, he is 26 and unmarried however the neurologist says he should get genetic counseling before deciding to father children. There is a 50/50 chance that he could pass this on if he has it (he does not appear to have it, but he has not had a genetic test), but I understood it could be prevented. So get genetic counselling first, if you are not pregnant yet. In my case the disease only showed symptoms at 53 and pregnancy did not bring it on any faster. At the time I also did not know I had ataxia.

Good luck

[Mirabella113 in reply to isabelalfaiate]

I had appointments with many doctors. No one could answer that question. I know that my baby can be healthy, that's not a problem. It's about me. My dad and sister started to get symptoms after 30. My sister is getting worse very quickly. And she's only 9 years older than me.

[Litty]

I too have SCA1 and I have 2 children. Ataxia really did not bother me but I did not know I had it when I got pregnant. We found out when they were toddlers. They grew-up knowing they have a 50% chance of inheriting the faulty gene off me (hard). It is difficult deciding to have a family but none of us would be here if our parents decided not to and you have die of something and SCA1 does not normally start till later in your life, so you have a long time before to do stuff.

Anyway good luck whatever you decide : )

[Mirabella113 in reply to Litty]

I know that I can have a healthy baby. That's not a problem. My dad and sister started to have symptoms after 30. My sister is getting worse very quickly and she is only 9 years older. I don't want to offend anyone but I rather not have a baby if it would be ill. I saw how my dad was suffering and its horrible to say but death was a relief for him. I think about it everyday and would never give that to my child.

[Litty in reply to Mirabella113]

I fully understand. It is a very hard one and I was sterilised as soon as I found out. I decided that I had two children and did not want to decide. I am so lucky I did not have to make a decision but I am so lucky and have 2 amazing children. I really hope they find some treatment for them.

[Mirabella113 in reply to Litty]

The next thing that push me away from having a baby is my husband. He can't deal with my ataxia. I don't have any symptoms yet but he saw what happened to my dad and how my sister is struggling. I'm not 100% sure if he will support me when I will need him the most. He don't want to talk about it with anyone and because he's keeping everything inside he's getting angry with no reason. I don't know what to do.