Bad News

So today, my daughter's father is coming around to speak to her about his condition. It seems as if he has inherited Spinocerebellar Ataxia Type 3 from his father and some of his symptoms are rapidly progressing.

I don't know how my daughter is going to take this news, especially after another awful situation that she's been going through. And I suppose this means now that her chances of also developing the condition are 50%.

It'd be nice to talk to others about this.

20 Replies

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  • Hello EChantelle :) It is not a "happy" diagnosis. Be really clear to your daughter, that this diagnosis absolutely was not preventable. You did not know, nor did he. That's really important. I have Progressive Episodic Ataxia, gene present, I cannot tell you how bewildered I was - that no one told me. Well they couldn't because they did not know. 50/50 is better than 100%. Fingers crossed she doesn't have this. She will know in her heart, if she has this, :( Be prepared for all the emotions. They will fade. She will eventually "accept" this, if this is her fate. This is so beside the point, there is this site called Ataxia fight back - it really has helped me - today I took off my clothes and didn't hold on to anything or sit down, simple thing that most take for granted, I haven't done that in years! Maybe suggest your ex has a look, it might help him, which will help your daughter, yes the author has a "pollyana" complex, but, what he says works ♡

  • Thank you.

  • Dear Echantelle,

    I also have ataxia, inherited from my father. We were three sisters and the other two have not inherited this. There is a 50/50 chance that your daughter may have inherited this. She should go for genetic counselling and do a genetic test. Meanwhile she should focus on the 50/50 chance that she has not inherited it rather than on the fact that she may have it. I strongly recomend that you all visit the site ataxiafightback.wordpress.com/

    And keep positive rather than depressed, think of lots of people suffering from diseases they do not even know they and then are surprised by heart attacks etc and it is too late. We are lucky, knowing we work towards a better quality of life. Being positive is half way there.

    Do not suffer in anticipation and try to cross the bridge before you get to it.

    All the best - Isabel

  • My daughter is only 10 at the moment and she's a worrier and overthinker so I don't really want to do the genetic testing anytime soon. She starts secondary school in September and I want her to enjoy the new experience without having a potential positive result ruin that. Maybe when she's a bit older and better equipped to make informed decisions for herself, we'll think about it then.

    Thank you and all the best to you too.

  • Hi EChantelle😊

    It's just as well you have prior warning of this, you know your daughter best.

    It may be that genetic counselling had been recommended to your daughter's father, this does happen with certain types of Ataxia. This link could be helpful nhs.uk search for 'what is genetic counselling and do I need a genetic counsellor'.

    Also, find out as much as you can about the condition before this discussion takes place. See ataxia.org click on LEARN, click on FACT SHEETS, scroll down to SCA3.

    ataxia.org.uk also has a fact sheet.

    Best wishes😊xB

  • Yes, I just want to become well informed now.

  • My husband has SCA, type unknown but definitely hereditary. He has a teenage son and we have a 4 year old together.....I cannot even begin to think about how and what to tell them. So far my husband's symptoms are fairly mild but they are progressing and the day is coming, soon, when we will need to talk to the boys. I am sure eventually we will find the words..........I hope you and your daughter are ok.

  • Thank you.

  • Dear Echantelle, I was diagnosed twelve year ago with Sporadic Cerebellar Ataxia (unknown cause, symptoms 24/7, progressive), although I had very minor symptoms starting about eight years before diagnosis. No one in my family, as far back as we know, has/had ataxia, except me. Funny as this sounds, although there's no cure, it would give me some peace of mind to know "why" I have this. I've had genetic testing for the know recessive and some dominant ataxia's, which was negative. I'm hoping to have genetic "genome" testing, as there's a recessive form that my neurologist suspects that could be identified in this way. If it's positive, it would mean I inherited a faulty gene from both my parents (they would be asymptomatic carriers). Therefore, out of their four children, so far I am the only one that would have inherited the faulty gene. If this is the case, nothing can be done about this! I just try to embrace all the things I can still do, rather than concentrate on what I can't. I try to have a positive attitude and count my blessings, as there's so many! I hope your daughter doesn't have to deal with this, although if she does, I hope she embraces her "new normal"! I find having a positive attitude is so important! Of course, I realize I may never have a reason for my ataxia revealed and I will accept that too! My best to all of you...,;o)

  • Yes, I am all for positivity. And try to teach my daughter the same.....to take each day as it comes, always have a good day and enjoy life to the best ability.

    Thank you.

  • Just a 'thank you' to the replies and all the best to everyone.

  • Hi there.

    I have cerebella ataxia type 2 and was properly diagnosed this year at the age of 25. I lived through my school life with no apparent signs (wasn't even aware of the condition) and lived well. When I was the age of 18 my father was diagnosed with ataxia. I still wasn't really showing symptoms and did not want to have the test. I went to uni and began feeling and showing symptoms in my 3rd year - when I was 21/22. At the age of 23 I was asked along to America with my friend but was getting worse but because I was going with friends I knew I would always have support and went on quite an active holiday and thoroughly enjoyed it. Then the next year me and a friend went to Thailand for 2 weeks. I was pretty certain I had inherited ataxia and also showed symptoms but I focused on the positives and i think having a positive attitude is really what you need. Also I was beggining to accept my condition and (I went on a group holiday) I wasn't afraid to ask for help- which people happily gave. What I'm trying to say is even if your daughter has inherited the gene, she is not alone in this and encourage her to have a positive attitude. And tell her to live her life and as you say, take each day as it comes and stay positive! 😊

  • Hello EChantelle. I think one of the problems that many people who are diagnosed with some form of Ataxia face is not knowing the type of Ataxia they have and for them it can be so difficult and frustrating to find relevant information. If you are looking for positives out of this, you appear to know that it is Spinocerebellar Ataxia Type3 (SCA3). So at least you can target just the relevant information.

    I too have SCA3 inherited from my fathers side. All I can tell you is that I believe SCA3 is late onset, meaning you can normally live the first half of your life without it rearing it's head. I certainly enjoyed sports such as squash, tennis, football and never had a problem with these. It wasn't until I was almost 50 that I started having slight issues with my balance....and only my balance. I am now over 60 and can still walk unaided, dress myself without problems, no speech problems. I know some people are less affected than others and I'm sure one day they will find out why this is the case.

    Some background.....I am one of 5, my brother has the condition, but my 3 sisters do not. As you already know, there is a 50/50 chance that it is passed on to children. I have two children of my own, a son and daughter, both now in their 30's. Neither have been tested (by choice) but nor are they showing any signs whatsoever.

    Personally, I feel lucky that I know the type of Ataxia and the gene identifier. But I also respect and agree with my children's decision not to be tested. They just want to lead a normal life and if at some point later in life they start to show signs they know what to be tested for. But it's still an IF! And even if they do start to show signs they are likely to be very slight at first and progression is relatively slow...it's not that you wake up one day and find have this horrible affliction.

    One point...because the condition is late onset my brother decided not to tell his young daughter about his condition until she reached the age of 21 so she didn't go through her teenage years with the added worry that potentially she could be affected.

    You didn't mention ages of your daughter or her father?

    As someone who has SCA3 I'm more than happy to help and communicate?

    Best Wishes.

  • Thanks Tony for being so open, it's really appreciated.

    My daughter is only ten but she sees the symptoms in her Dad and Aunty. I do support her being told because i am one for being as truthful as possible with children, especially if they are asking questions.

    If I remember rightly, her Grandad started showing signs in his 40's and her Dad says he's notice slight symptoms for the past couple of years but the last few times I saw him, I knew before he even told me. I could see his Dad in him. He is 35 and his sister is 38.

    Being totally honest, I did consider having my daughter tested but that was more to do with me and my need to know personality, than about her. However, upon reflection, I know it is not the right thing for her at such a young age. She's started secondary school in September, a new chapter of her life and I just want her to be as care free and happy as she deserves to be.

  • Personally speaking, I think that is a good decision. I recall the devastation I felt when I got the diagnosis. Especially as I remembered my father's final years.

    I think what I'm saying is that if there are no symptoms, knowing that you may develop SCA3 later in life would be a massive burden to carry around. None of us know what is around the next bend in life. This may not be for me to say but I think the decision regarding testing is something to put to one side until your daughter is old enough to play a part in that decision. By the way, my daughter has two children, (my grandchildren) one of whom is 10 year old Mia. The fact that granddad has a slightly unsteady walk is just that! But the hard facts are that one or other of my grandchildren "could" be affected if in fact my daughter carries the gene. Of course there is no right or wrong decision regarding testing.....it is personal choice. But the implications of being tested positive could be claustrophobic and may ruin what should be happy and carefree younger years.

  • I think because my daughter has been around her Grandad for years and then to see her Dad with the same symptoms just not as bad, it seemed unfair to her not to be upfront.

    Well, it's a new month and we're just going to see what it has in store for us. I do find the thought of it all hard, though taking each day as it comes is how I strive to live life and encourage my daughter to do the same.

  • Yes, knowing when to tell or not is extremely difficult. And I can agree with both positions! For sure, forewarned is forearmed. Personally, if there was something in my future that MAY become a problem, I would rather know now. But I wouldn't want to worry a child unnecessarily. It MAY not become a problem for them anyway.

    Fortunately, I don't have any children of my own. But I have nephews & nieces who MAY be affected if a genetic cause is ever proven (it is highly suspected at the moment - I have an older cousin with the very similar symptoms).

    My sister-in-law has to make the decision of when, and if, to tell her children. She doesn't want to worry them - but at the same time she wants them to be prepared.

    What a decision to have to make?!

  • What a decision indeed?!

    How comes you are still awaiting confirmation on a generic cause? Is it not in your family history?

  • I have no family history of ataxia (as far as I'm aware - but I've looked quite closely). I do, however, have an older cousin (on my father's side) who is exhibiting some VERY similar symptoms to those I first experienced. SHE is still being tested (she sees a neurologist in Aberdeen).

    I've personally been tested for all known genetic variants that can be tested for. And all tests have come back negative. So I have been lumped in with the 50% of case that are "idiopathic" (which is just doctor-speak for "we don't really know").

    But even although my cause has not been specifically identified, because I have a close relation who is also exhibiting similar symptoms, but who also has no specific diagnosis yet, a genetic cause is "suspected".

    Only "suspected" though. It could be the case that there is no genetic link in our symptoms.

    Having spoken to her, it would appear that she is 1-2 years behind me in the progression of symptoms.

  • Oh wow! Okay.

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