Hello
I am in my early 30’s and have recently started thinking about having a family. Now I do know that my mother has ataxia. I do not yet know about myself but feel to have some early symptoms. I am getting a genetic test done in next 2 months.
I want to check with you if there is anyway to be sure that I don’t pass on this gene to my next generation, IF I do have SCA 2.
I have 2 children in their 20's.My philosophy is there will prob be a cure by then.I had not even heard of Ataxia when I had them. I did not get Ataxia until about 2008.They did not want a test.
I also have SCA2. A few years ago my male cousin (affected) and his wife wanted to have a baby. They decided to get pregnant and then test the embryonic fluid for SCA2. They would abort if the baby had it then try again. I know, disgusting, but you know, #notmylife. They said the baby was normal. It was born with so many genetic repeats she lived to 18 months. The lab messed up. Talk to your doctor about transmission. You don't say if you are a man or a woman, but transmission from a father to his daughter can get absurd. Also go check out the website WWW.NIH.COM for more information. So the short answer is "no", unless you get pregnant in a petri dish and they artificially inseminate you. Even then there are no guarantees.
I think you should consult a geneticist who will explain and give you your options. Your doctor should be able to refer you to one.
My best wishes to you.
NO YOU CANNOT!!! Depending on if it is a recessive or dominant type, there is a 25% or 50 % chance that you WILL pass it on. NO ifs, ands or buts. You cannot bank on a 'cure' I don't think there is any such thing as a 'cure' forr anything. Once you have it, you have it. There are preventative vaccines, management drugs and therapies, etc., but no 'cure' for much of anything. Science has not even come up with one for the common cold.
The other choice is selective insemination, which carries an astronomical cost. It is a gamble
I agree with Cicina! My children are grown and I have two grandchildren and one on the way. I had both my children years before being diagnosed with my ataxia. In fact, I had never even heard of ataxia when diagnosed. My best to you..., ;o)
My daughter 10 has itpr1 ataxia n it wasnt passed on it was a mutation of the gene n when she’s older n wants kids i got told she’l have to talk to a genetic doc
You are wise to get the testing done, because then you will know definitely whether you have it or not. At this stage, there is nothing can be done to change things with your children. If you have it, they have a 50% chance in the case of dominant genes, 25% in the case of recessive genes of inheriting it. Look at it the other way too, they have a 50/75% chance of NOT getting it. However, with research that is being done, by the time the condition appears in them (if they have it) hopefully there may be a cure or at least a good treatment.
I have four children and six grandchildren. Only one of the children (at this stage) has opted for genetic testing. My neurologist and geneticist would love them all to have testing of course, so that more research can be done. Their attitude is, if they have it, they have to cope with it. They would prefer to have my condition than their father's (early onset frontal lobe dementia).
So no, you can't do anything to avoid passing it on. But forewarned is forearmed, and hope for improvements in the future!...:)
There are places that do pre-implantation genetic testing, which could indeed prevent transmitting ataxia to one’s offspring: see, for instance, http://www.reproductivegenetics.com/single-gene-disorder-tested/
What if you have testing done and then you want to change insurers you would be seen as a pre existing condition depending on laws where your at.
I'm 29, and I got PGD for my SCA 8 to avoid passing it on. With PGD testing, you have to have IVF. Docs retrieve eggs, do PGD testing, and depending on the results, transfer an unaffected one to your body and freeze the other unaffected embryos. For PGD, the lab biopsies a cell from each fertilized egg, and they test the cell(s) for the mutation. As in my case, SCA 8 is an autosomnal dominant condition, and I had a 50% chance of passing it on. The results can read "Affected," "Unaffected," or "unreadable." From my egg retrieval, the doc got 15 eggs, 14 fertilized, 10 survived the biopsy, and only 1 was unaffected. If you have more questions, hopefully I can help you! Good luck!
As of January 1, pre-existing condition exclusions are prohibited for any health insurance plan in the United States.
gelu65 said:
What if you have testing done and then you want to change insurers you would be seen as a pre existing condition depending on laws where your at.
Thanks for the information, beva.
beva said:
I’m 29, and I got PGD for my SCA 8 to avoid passing it on. With PGD testing, you have to have IVF. Docs retrieve eggs, do PGD testing, and depending on the results, transfer an unaffected one to your body and freeze the other unaffected embryos. For PGD, the lab biopsies a cell from each fertilized egg, and they test the cell(s) for the mutation. As in my case, SCA 8 is an autosomnal dominant condition, and I had a 50% chance of passing it on. The results can read “Affected,” “Unaffected,” or “unreadable.” From my egg retrieval, the doc got 15 eggs, 14 fertilized, 10 survived the biopsy, and only 1 was unaffected. If you have more questions, hopefully I can help you! Good luck!
How is genetic testing done for SCA? Blood work?
http://www.ataxia.org/pdf/Gene_Testing_for_Hereditary_Ataxia.pdf
Hi Julie,
This is from the National Ataxia Foundation website
Thanks for posting this, Cicina.
Thank you for this link!
Cicina said:
http://www.ataxia.org/pdf/Gene_Testing_for_Hereditary_Ataxia.pdf
Hi Julie,
This is from the National Ataxia Foundation website