Sca 6 and having a baby

Partner just been diagnosed with sca 6 has no symptoms yet. I already have a 3 yr old which is really upsetting who has not been tested .

We were trying for a baby at time of diagnosis. Don't know what to do would you have another baby knowing what you know with sca 6. I know i can have tests early to see if baby will have it.

Have you still had a good life . Sorry just really struggling

Thank you every one x

26 Replies

oldestnewest
  • Hi 🙂 SCA6 is typically late onset. Your partner may not experience symptoms himself until he reaches middle age, and even then the symptoms may not be exactly the same as other members of the family who have the condition. So, it follows that if any of your children have the gene for SCA6, basic symptoms such as poor balance would likely appear around middle age.

    A Genetic Counsellor would be able to help you with this dilemma 🙂xBeryl

  • Thank you so scared ! Don't know whether to try ivf or risk having another. Can you live a happy life before and after onset x

    What are the symptoms like for sca 6. I heard this is a better form to have if any

    So confused right now.

  • Beryl I think it was you I spoke to on phone the other day might be wrong.

  • 🙋Yes it was 🙂xB

  • Thank you for your help x

  • My husband was diagnosed with SCA when our little boy was 3 and he has fairly mild symptoms still. I am desperate for a second child (our little boy is now 6) but really struggle with what is 'right'. We couldn't have any testing as his type is unknown and, to be honest we couldn't afford ivf anyway and I couldn't terminate 'just' for having SCA either.....it is pretty much all I think about so it's nice to hear others views! X x

  • Hi sorry replied but lower down. It's so hard to deal with all this x

  • I can relate to your struggle. There is an unidentified late onset SCA in my husband's family. There is no test so we don't really know if my husband has the gene or not, but we know that there's a 50% chance. We decided to have children and have two gorgeous kids. My husband and I try to stay positive and focus on life but we have moments of fear for the unknown future. I don't think there is a 'right' answer, it's a very personal thing for each couple.

    I send you a virtual hug, I do understand the heartache around the decision you are making. Xxxx

  • Thank you hope would be nice to be able to stay in touch I just don't know what to do x

  • Yes, let's keep in touch. X

  • Hi how are you managing I'm still trying to get my head around it on think it's more the uncertainty . I know my partner has got the gene just hoping my little boy got the lucky side x

  • I have good days and bad days. I think I am only just coming to terms with the fact that I will be hoping for the best and preparing for the worst for the foreseeable future. Like you say, the uncertainty is very hard. But my husband and I are also very aware that we can't let this destroy everything that we do have. We try to focus on the simple things in life and the positives. So hard though. Have you had any genetic counselling? Xxx

  • Not yet going this month . I'm trying to stay positive . Xx fingers crossed

  • We're hoping to get some counselling and advise. I hope is helpful for you. X

  • I'm in the same boat we just recently found out partner hasn't got no symptoms yet thank goodness and will forever worry about my 3 yr old little boy.

    I would really like to have another child. A lot of people saying to have another one as it's late onset. Bit I feel I want to stop it for my family and next generations. If I did get pregnant I'm the same don't think I could terminate . It's whether to risk it or not

    We are currently looking into ivf see how much it would be. It is so scary and I really would love my little boy to have a brother or sister x

  • Hi Again Lola, Do they offer genetic counseling in England? Deciding whether or not to test for genetic flaws is a very complex issue and one you shouldn't have to go alone. Hopefully counseling is part of your health care options.

    My only personal thought is how I deal with the knowledge that my teenage children may have inherited the SCA1 gene. When I first learned of my illness and all it's ramifications I was devastated, but I am the son of an Hungarian refugee. My first bike came from a junkyard and I paid for my own private school and college education by working jobs that ranged from paper boy to Life Guard. The point is I have never been one to accept the world as it is and one who always had faith in the world and in myself.

    The science of genetics is moving at lightening speed in terms of human advances. It may not seem that way to someone who is sick right now today, but personally I have every faith in the world that your children will see a complete cure for most ataxias including SCA6 in their lifetime.

    Dr. Beverly Davidson of the Children's Hospital of Philadelphia has spent most of her life researching one such solution. She has demonstrated the ability to cure mice and monkey's with her procedure which in genetic parlance is known as AAVRNAi. This method injects a virus into the brain. The virus carries a special message that blocks the bad message created by the defective gene. It is proven technology and is actually moving into human trials. It has even been used successfully in treatment of lesser illnesses affecting the eye.

    In other words, I for one am certain the future for your children is bright!

    Here's one of the latest papers on the topic showing incredible progress:

    ncbi.nlm.nih.gov/pubmed/276...

  • Thank yous so much 2sunny you make me feel so much more positive towards this. Have any of your children want to get the tests.

    I only have one child at the moment but always wanted two. Was thinking if doing prenatel testing but don't know if I could terminate knowing they could still live a good life.

    At the same timeI don't want it to keep going around In future generations.

    Ireally hope and pray a cure comes about. Is there a lot of research going on ?

    Due to see my gentic counsellor on the 24th. I don't know what to expect from any of this alot is so uncertain . I'm not good at uncertainty.

    I cry alot xxxx

  • Good luck on 24th Lola, I'll be thinking of you. Hope you are doing okay.xxxx

  • Than you hope hanging in theory how about u x

  • Ups and downs, but trying to focus on the ups! Sometimes I feel it's all so unfair. But I guess that's life.

    Xxx

  • I know exactly same as me feel stuck on what to do next . Feel like it's in my mind all the time. Don't want to ruin future with my little boy worrying so hard x

  • Lola, I am not a doctor, and I am not a licensed or trained counselor. My name is Joe Peck, and if you go online to Facebook and look up Joseph Peck (Csizmadia) (I took my wife's last name when I married) you will see that I am just an ordinary "Joe" BUT even if I'm not a professional healthcare worker my intentions are honest and my research is very real. So as one ataxic patient to the partner of another, I urge you to listen to the doctors or counselors near you, but at the same time I want to try and assure you that all the fears you are feeling are common and normal. More importantly, I want to convince you that the future is very bright for many ataxia patients including your partner, and you really need to stop worrying. The worst case scenario is that trehalose doesn't work if your partner eats it, and SCA6 patients end up needing a shot in the arm once a week. That treatment is proven and will be available in a few short years and would very likely give your partner a normal or almost normal lifespan.

    Yes, there is an enormous amount of research happening, and the best part is that most ataxia's are similar to a lot of other genetic disorders so when there is a breakthrough in Huntington's disease or OPMD or Alzheimer's or countless other genetic illnesses those breakthroughs will very likely translate into treatments for other similar illnesses like SCA6.

    No, I have not told my children about the illness yet for the very reason that I don't want them to dwell on something that is decades away. When or if they get married, I will, of course, share the information with them so they can make the hard choices facing you now, but until then only my wife and I know about the family illness.

    If your partner is today symptom free you have decades to go before the really hard times would even begin to be a reality. Don't let a fear of tomorrow ruin your today. Yoga, prayer, meditation, exercise, find whatever it takes to get your body at ease, but I hope you will believe the word of one highly educated patient that is here to tell you, cures are very likely during your lifetime and absolutely likely during your child's lifetime!

    Stop crying, enjoy life. Heck you live in one of the world's most idyllic nations. I'm sure you don't always feel that way, but every person in the world envies your accent and homeland, and that includes me :D

    Joe in NY

    EDIT: For what it's worth I think that if you had a baby now you'd be looking at a 50/50 shot first of all which is pretty good odds and even IF the baby did get the gene you are talking about 40+ years until onset and 20 more until life gets tough, and by then I'd be willing to lay 100% odds a cure would exist, but regardless of that fact, I kinda think I'd rather live a slightly shorter life than no life at all, but please, please just use that as one person's thoughts.

  • Thank you . it's nice to have that bit of reassurance that every thing is going to be ok.

    I am a right worrier and this just took me by surprise or shock should I say.

    Thank you very much for making me feel that bit better. Look forward to your future posts. Please keep updating me on any research.

    Thank you x

  • So reassuring to hear your positivity and hope about the future for a Ataxia prevention/cure. Like Lola, I cry a lot at the moment and worry about the future for my husband and kids. I find this forum so positive and supportive - thanks for being here.

    X

  • For whatever it's worth I added an EDIT at the end above ;)

  • Thank you

You may also like...