I am a female and am 25 years old. Although i have not officially been diagnosed I know i have Cerebella Ataxia and have done for 3-4 years. I have inherited it from my father along with my brother.
My life has been good, however (i work with young children) my work have recently become very concerned about me (i have 0% balance, no co-ordination and fall over a lot etc.) and wish for me to undertake a health check and have expressed their concern over being around children (i could possibly fall on) and may not wish to continue to give me work.
I, along with my parents are very hopeful for this 'cure' in 2020. Can anyone let me know how likely this is to happen??
Thanks
Laura
Written by
ljp103
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Hi Laura, The researchers have made significant progress over the last few years, but so far they have identified over 90 different ataxia genes (i.e. 90+ different types of ataxia) so unless you know which ataxia you have it's impossible to say whether they have made any progress with yours. We also know that we have many more ataxias to find, as not everybody who gets genetically tested get a precise diagnosis of the type of ataxia they have. It's therefore quite important to get a genetic test so that when treatments and cures start to become available you can benefit if there is one for your ataxia. In addition, you might also be able to participate in trials in the meanwhile. You can find out about research progress here: ataxia.org.uk/Pages/News/Ca...
If you live in the UK the quickest/easiest way to get a diagnosis is to get a referral to one of our Specialist Accredited Ataxia Centres which you can find out about here:
ataxia.org.uk/ataxia-centres1. But if you aren't able to travel to one of these, referral to a local neurologist would be able to access genetic testing for you and help you get a diagnosis.
You can also get advice from our Helpline on 08456440606 (Mon - Thurs 10.30 - 2.30)
Dear. Laura. Welcome to the Ataxia club! There are a lot of us with different types of Ataxia and many of us don't know what type we have. Ataxia UK are aiming to get some positive results and hopefully cures by 2020 and if they are successful it will be truly wonderful We must all keep hoping and any financial help we can give is always welcome
I have late onset cerebral Ataxia.I am now in my late 40's and I was diagnosed with Ataxia last November although I had had symptoms that got progressively worse and was looking for a diagnosis for almost 20 years before being diagnosed. I was referred to a specialist Ataxia Unit in Oxford.
When i was diagnosed I obviously read up on Ataxia symptoms, causes and what I can do to help the symptoms. I found out that there are loads of different types, some worse than others and also that there are a load of reasons why the symptoms occur including hereditary, virus, head/neck trauma, back trauma, previous illness. As i had broken my neck, back, had a head trauma and had a very severe virus I assumed it was one of these-but apparently it was hereditary! From what I understand in my case, if a parent has a faulty gene it will be passed on to their sibling. BUT the sibling will only experience symptoms if their other parent also has the same faulty gene and then there is a 50% chance the sibling will have symptoms. Less than 1 in 100 people will have the faulty gene, for them to also have a partner who also has the faulty gene (another 1 in 100) so multiply 100 by 100. Then there is only a 50% chance a sibling will have symptoms - so it is fairly uncommon!
The balance problems you are having will be related to the Ataxia to some extent. I also have very bad balance and fall over but was told that although Ataxia will account for some of this, there is probably another reason for my severe balance problems (which I am looking into via ETN and Neurology).
My last trip to the Ataxia clinic in Oxford was about 2 weeks ago and I was told that there is no cure they are aware of and that symptoms will probably get worse.
In a very long winded way of explaining, what I would suggest is getting diagnosed, finding out what Ataxia you have, what has caused it and only then will you know whether there will potentially be a cure for you.
Had to write as I am exactly same as you......just been diagnosed with inherited Cerebellar Ataxia (scat 1) from my Dad and also affects my brother and extended family of aunts, uncles and cousins. So although have known about ca since childhood, it is still a shock to be told that news.
I waited to be tested until i was 40 as I didn't want to know. I didn't want to change now people treated me and also social life habits (come on we all need a good party!!!). Anyway my advice to you is to be tested and then you know for certain. We are good at second guessing things. You can get sorted with work and they can help make adjustments or even retrain for different career.
There maybe a cure, there may not but until that day, we have to put a smile on and face the world, making some changes to make things easier for us. Good luck with everything.
You have made me feel very lucky. I was diagnosed with ataxia (variation not known) about 4 years ago. I am now aged 82 so haven,t suffered very long, although I did have the symptoms a few years before.
I hope you are getting plenty of help-unlike me-nothing!
I am grateful for your story and won't moan about my condition again.
At the time of diagnosis I was asked by the Ataxia Nurse if I'd donate DNA for research. It's possible that at the time there was funding available for a specific
type of research, for example Idiopathic.
So, if you contact your Neurologist, or secretary, they should be able to advise you.
Hi Laura! - Lots of palliative and practical stuff for you to research and use on this site - (but stem-cell research is what will bring about an actual cure!) - Hope you are are spreading awareness and fundraising activities?! Ataxia UK can help with this...Meanwhile - re your work - create a website? blog? - do you have a local Support Group? - Maybe your parents could get involved?
Keep well - and happy - and keep in touch with AtaxiaUK website and HealthUnlocked.
We are all here for you!
Stay well! - and connected! And above all - do not despair - go with it - and explore all of your alternative life options. There are many! Remember you are alternatively abled. !
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Happy New Year Everyone! I cannot wait to see what 2020 brings 😀
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