Why am I a part of the Ataxia UK community? - Ataxia UK

Ataxia UK

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Why am I a part of the Ataxia UK community?

Elle_Mae profile image
31 Replies

Unlike many of you here I am not a sufferer of any Ataxia, nor am I a family member or close friend of a sufferer. Perhaps it's wrong for me to be a part of this community due to no real connection with ataxia, maybe some of you will be offended at the fact that I signed up to this community - so let me explain.

I am an 18 year old student making my progression into University where I hope to study biochemistry and neuroscience. My main focus and drive is to find cures to Ataxias of all forms, therefore it is vital to me to continuously learn about the Ataxia community and how this disease affects sufferers and those close who may be involved.

Already I am in awe at how strong this community is, and I find it extremely inspiring and motivating that you can all join together with this disease. It gives me greater hope that we can find a cure some day, or at least more affective treatments in the meantime.

Initially I was inspired to become a physiotherapist, as I understand that this treatment can work wonders in slowing the progression of ataxia. However, I want to be more involved with the development of future treatments, sadly with physiotherapy there is a point where it can no longer limit the disease progression - and other treatments are needed.

I hope that I can continue to learn about the varying ways ataxia affects sufferers and how we can improve medicine in response to this!

Thank you very much for reading this and I am truly sorry if any of you find it offensive.


31 Replies
HarryB profile image


I think it is wonderful that you want to pursue a career in researching the ataxias and reading the experiences of people with ataxia will, in my opinion, help you enormously. There is nothing more motivating than being inspired by an individual's or group's experience.

Can I ask how and why you became interested in the ataxias? A lot of 18 year olds, unless they have a personal connection to the condition, have never heard of it. Also, where do you hope to go to University?

Best Wishes


scruffycat profile image
scruffycat in reply to HarryB

I certainly hadn't heard of ataxia when I was 18. It can't have been invented then.

I f you're curious, I'm 48, otherwise I'm 21!

Elle_Mae profile image
Elle_Mae in reply to HarryB

I first learnt about the disease through a Japanese Drama called 1 Litre of Tears, which is based off some diaries written by a girl named Aya Kitou, who battled with the disease - spinocerebellular ataxia for 10 years.

I found her story incredibly moving and inspiring and it led me to do much more research into the various types of Ataxia.

I hope to go to Keele university to study Biochemistry and Neuroscience in order to become a researcher :) Thank you all for your support!

siver52 profile image

well done you !! keep it up x

Fifa profile image

Hello MitsuMallow

I have no objection to your joining the group whatsoever. Good on you and welcome.



tedjohnson profile image

Very well done and welcome Mitsdumallow How lovely to hear about your ambitions By

all means ask any questions you like and between us all we may be able to give you

some answers

What probably keeps us all fairly cheerful is that you don't have to look very far to see

other people with very much worse 'illnesses' and a lot more constant pain

Good luck and keep up the good work Tedjohnson

ceri52 profile image

Welcome to the group from cardiff in south wales. Glad to have you with us. :-)

Wellcome if there is anything I can do to aid you in your research please feel free to ask, you sound worried about beeing an aparant 'outsider' but don't. I think I can say on behalf of everyone it is good you are taking both this path and an interest it is rare for someone your age to have even heard of ataxia let allone want to study it

good luck


wibblywobbly profile image

Hi and welcome to our group. I think it's fantastic that someone, especially of your age, is taking such an interest in our illness and has ambitions to help us and others in the future. If you wish to ask any questions whatsoever please do not hesitate, I, and i'm sure many others will be happy to respond.

neta profile image

I hope this is not a hoax of some kind and that you are on the level. Sorry for a degree of caution but we were just warned on another site that there are predators around and to be careful. There seems to be no vetting process here. With that caveat having been said, I, too, welcome you and hope your research will be successful. A word to the wise and potentially frustrated: there have been many "false alarms" regarding a cure for ataxia and other neural conditions. It's either considered too rare to invest in by the pharmaceutical giants or the too rare to work on. Also, no one famous seems to have it. I am sure if some famous royal or actor or personality had it, there would have been a cure already. Physiotherapists can't help that much in my humble opinion. What is missing is the magic bullet. Good luck. N

Elle_Mae profile image
Elle_Mae in reply to neta

Don't worry, I'm not interested in personal information or anything like that - You're all welcome to read my personal statement that I put on my university application if you wish, just ask :D

I'm not at a professional level to ask for detailed medical histories or anything, I'm just mostly interested in the main problems ataxians face and the current treatments available.

My goal is to look into ways to limit or regenerate any lost tissue due to brain degeneration diseases including ataxia, but also Alzheimers diseases and Multiple Sclerosis. Thank you for your support - it means a lot!

neta profile image
neta in reply to Elle_Mae

Welcome then. This is indeed a very creative way to study the patients. I don't live in the UK, btw. Not that it matters. Ataxia has no borders.

cclive35 profile image

totally agree about physiotherapists neta ive yet to find help in this area i do find excercise and good diet help but i just do my own thing. welcome mitsu and good luck im not sure how to help but a good start is to ignore the majority of doctors, nurses,physios they pretend to know what to do but just treat us like we have broken limbs or vertigo awareness is finally getting so much better with sites like this and people like you taking an interest but i must admit, i gave up trying to get help years ago

neta profile image
neta in reply to cclive35

Hey CClive35,

I also do my own thing. The physio's here treat me like a stroke patient which I am not! Now they want me to go swimming. The only good thing about the physio's is that they have good equipment. I am still hopeful for a turnaround; there's alot of research on the brain but when one goes to the dr., its just that mournful phrase again, no cure, sorry. Well-meaning pie in the sky or just a fake ratings game??. There is so much confusion. Now I hear the Japanese are very advanced re ataxia. Well, I wonder, does my doctor know what the Japanese know? Is there any communication with Europe and the USA? With Indonesia and China? N

Wyndham profile image

You are very welcome, especially after your lovely introduction.

jonbon profile image

Hi MitsuMallow,

Welcome to the site. I found Ataxia UK in March so am relatively new too, I do have ataxia and am waiting to go to a specialist centre in Sheffield. This site has helped me tremendously, everyone is so willing to help and give positive tips. The emotional issues that a sufferer goes through are enormous and I am certain that being able to share problems, and identify with so many people, and learn to have a bit of humour has prevented me from becoming bogged down in all the negativity of this condition and so staved off depression.

I would be more than happy to answer any of your questions and think it is wonderful that you want to be in a position that may one day help.

AlisonS profile image

Hi MitsuMallow,

It's wonderful to hear from you and I'm very pleased you are interested in pursuing a career in ataxia research!

Your idea of getting involved is great. We have many Branches and support groups across the country for people with ataxia - perhaps this would be a good way to get to know some people with ataxia, for you to learn more and maybe even make some friends! If you are interested please call the helpline on 0845 644 0606 and we will let you know where your local branch is.

Best wishes,


Razzy profile image

Welcome to the group, in my mind anyone willing to learn more about ANY TYPE of ATAXIA is welcome, and if getting the word out to Students and future medical proffesionals is helped by them joining groups such as this then it can only be for the better :) good luck in your studies

All the best for your future in this line of work


february profile image

Hello MitsuMallow and welcome to this site! I think it's wonderful that you're so young and want to study degenerating diseases like ataxia, as well as Parkinson's and MS! I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) 10 years ago at age 49. Until my diagnosis, I had never even heard of "ataxia". Unless you already know about it, there's a "Living With Ataxia" site based in the US (where I live) that would be helpful also. There's also the "National Ataxia Foundation" site that is full of information. My best to you...;o)

scruffycat profile image
scruffycat in reply to february

One of the good things about the US is that, if you're in a wheelchair, they still treat you like a person. I love it. Don't think I could live there, but to visit, it's perfect.

It may be a facade, but when you're on holiday, who cares.

silkwood profile image

Hi MitsuMallow

I was at university in the late 70s and with a lot of Medics.

Dad had Parkinsons in his early 50s so that influenced me a lot.I now have Ataxia.

I was the same age as my father when I developed ataxia which is why the Neurologist thought it might be genetic but so far he has been unable to find the link.

With my particular CA(ideopathic)it doesn't seem to have affected my cognitive abilities but just my physical.I went on to be an English and Music teacher and did a PGCE on top of my degree.Back then there was little they could do for Parkinson's but now they have deep brain stimulation etc and can do a lot more.

Maybe you can do the research into the many different ataxias.I get lumped with the MS people and those with a stroke.Any fresh study into Neurological diseases will be good.

I can understand your hesitation but what better way to learn about the impact of this disease but on this site.Good luck with your studies at Keele.I went too Cardiff University and think fondly of those days.


hymek7000 profile image

I would say keep up the good work. I was diagnosed with Ataxia 6-7 years ago. The point is that I was with my Doctor at the GUM clinic because I am HIV Positive as well when a man came and did some very elementary tests and declared that I have ataxia. No professional has ever spoken to me about ataxia since but 8 times a year I go to hospital to have my medication given to me and to be told how well or otherwise I am doing. We need people like you to inform us of what is wrong with us and the only way you can do that is to learn about the problem and then tell the patients. Teaching granny to suck eggs I suppose but that's it. Thank you for your work and best wishes for the future. Stay on the website and learn from us.

in reply to hymek7000

That part hurts a professional can pass you by, while you suffer and need help. Its great to know but it's not joyful.

Litty profile image

Welcome and good luck : )

Welcome, I hope you learn a lot from the site from the people here. I agree with `neta` and do hope this is not a hoax.

Elle_Mae profile image

Update! I'm 22 now and am in my second year studying Biochemistry and Neuroscience - well on my way to finally being able to research ataxia.

I hope you're all well, and I wish you all the best x

in reply to Elle_Mae

I think a lot of inherent diseases come from incest, I don't put it past my 3rd great grandma what's that sayn keep family close keep money closer.

I have Ataxia and you don't have to have it are be related to those that have it, why because everyone who decides to have a child can be in any situation many face day to day. Nothing you say will offend me, I've kinda been through the worst with no help till the age of 35 to 38. I had Ataxia since birth.

Nerak4 profile image

If anyone finds offence as to your motives there is something more then Ataxia wrong with them . Best of luck for your future Elle Mae

ddmagee1 profile image

On the contrary! Personally, I think this is, more than likely, a great way for you to see, from a practical viewpoint, of what it’s like, to have Ataxia, from people who suffer from it’s affect, in their daily lives. That will give you valuable insight, with your studies! I believe that should be a prerequisite for those who study neurology, and neuroscience, to experience it, looking at it from a sufferer’s viewpoint.

7151 profile image

Hi not offensive at all ..

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