Ataxia UK
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Negative test results and concerns regarding pregnancy

I am new here. Hello!

My daughter was diagnosed with ataxia a year ago and all her metabolic and genetic tests have returned negative. She and her husband are planning to start a family but are very concerned about the possibility of passing on the ataxia to a child. If anyone can please share your dilemmas, experiences and advice regarding this issue we would appreciate it a lot as at the moment we are fumbling in the dark.

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My mother passed on ataxia to myself. Although I wish I didn't have ataxia, I am grateful I was born.

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Thank you 💐

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It depends on what caused the ataxia. If u get it from having a neurological disease that is hereditary, which usually becomes a product of it. My Ataxia developed from a head injury from an auto accident and not considered genetically. Talked this over with your neurologist to get a straight answer. Good luck...I hope u get the answer you want to start a family. God bless! 🙏😊

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Thank you🌷

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My daughter has a lot of medical records, on these it is thought that she has progressive cerebellar ataxia. We have been told we may never know exact diagnosis/cause.

However I do recall at one of the early meetings the consultant raised concerns over the possibility of us expanding our family. I think the general consensus is that we could potentially pass on a faulty gene to another child.

Saying that we also have another daughter (older) who has not been tested but at the moment displays no symptoms. Hopefully this snippet of information may of been some help in decision making.

Best wishes

Carly

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Thank you Carly. 🌹

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Hi Alon, your daughter could join the 100,000 genome study if you are in the UK . You have to fit the criteria to join so best to ask your specialist. They sequence your whole DNA so better chance of a diagnosis and if it is hereditary.

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Dear Alon,

My neurologist told me that if my children want to have a family medicine is now able to eleminate the faulty chromosome and there is no danger that the baby will develop ataxia (if it is genetic)

I can give you my experience: In my dad's geration out of 5 sibblings only my father and his older sister had it. There were 14 kids in my generation. My aunt had 4 kids, all well over 65 and none of them have ataxia, they are all healthy. My dad had 3 girls and only I have it. My older sister does not have it and my younger sister passed away at 45 with a heart attack, so we do not know if she was affect, but chances are she was not. Get advice from your neurologist , am sure he can advice or then He can guide her to have a healthy baby.

Like wildstyler, I inherited this desease from my father, but I am greatful that I was born.

Keep positive all will work out in the end.

Best wishes

Isabel

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Thank you so much for this Isabel 💐

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My husband has ataxia but was diagnosed after our little boy was born. I have spent six years trying to decide whether to have a second child! I don't think there is a right decision but it's nice to hear others views.....especially those with Ataxia who say they are glad they were born. That reassures me that the son I have will find a way to cope if the worst happens and he has it too.

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Yes I agree it does seem like the the dilemma is almost an unbearable one. I too have been hugely encouraged by the fact that people have expressed happiness with their lives despite having to live with ataxia

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