Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,070 members • 4,642 posts

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Turkey...

SCA disease is very passive in my country. This tweet is our meeting place. https://x.com/Konur48728623?t=xK9rmD8Bz_QLOfW0_5QG6g&s=09

SCA disease is very passive in my country. This tweet is our meeting place. http...

•24 hours ago

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Germany..

I am investigating very seriously.Can anyone recommend a hospital or two for ataxia treatment in Germany? Not many, just certain hospitals.

I am investigating very seriously.Can anyone recommend a hospital or two for ata...

•1 day ago

Sca....

Does anyone know a good place as an ataxia hospital in Germany?

Does anyone know a good place as an ataxia hospital in Germany?

•4 days ago

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For anybody still Idiopathic

In 2023, the gene that causes a type of late-onset spinocerebellar ataxia called SCA27B was discovered. Since then, researchers have been developing a genetic...

In 2023, the gene that causes a type of late-onset spinocerebellar ataxia called...

•4 days ago

wheelchair

hi, that’s me back to using a wheelchair. I have been trying to a void the wheelchair for a while. But my ataxia is getting the better of me.

hi, that’s me back to using a wheelchair. I have been trying to a void the wheel...

•7 days ago

A Webinair discussing the potential of Gene Therapy as treatment for Ataxia.

🙂 UK TIME…..7.30PM Join NAF on August 22nd at 1:30 pm CDT for our webinar on Gene Therapy. In this session, Dr. Carolyn Yrigollen will teach us what gene...

🙂 UK TIME…..7.30PM Join NAF on August 22nd at 1:30 pm CDT for our webinar on...

•11 days ago

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For Parents of Children with Ataxia

🙂If you are a Parent of a child diagnosed with ataxia…this is an opportunity to join a Webinair with a Specialist Paediatric Neurologist. UK TIME ……..7PM...

🙂If you are a Parent of a child diagnosed with ataxia…this is an opportunity to...

•11 days ago

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Covid and Ataxia

I have SCA6 and recently tested positive for Covid. I have none of the usual Covid symptoms but my Ataxia symptoms are much worse. Impossibly dizzy,...

I have SCA6 and recently tested positive for Covid. I have none of the usual Co...

•12 days ago

Sca yurt

Has anyone researched stem cells in Thailand or been there?

Has anyone researched stem cells in Thailand or been there?

•15 days ago

Genetics results: Anyone with AOA4 in UK?

Hi, After many years without a diagnosis, I finally got Whole Gene Sequencing done myself (with Nebula Genomics). In my data I screened ~1300+ neurology genes,...

Hi, After many years without a diagnosis, I finally got Whole Gene Sequencing do...

•16 days ago

my Ataxia

I was recently chatting with my elder Brother about Ataxia….. he told me that I was born with body tremors, but as far as I know, it was never investigated. I...

I was recently chatting with my elder Brother about Ataxia….. he told me that I ...

•16 days ago

Dealing with minor Speech issues.

🙂 Many of us have noticed changes in our Speech…it can be embarrassing and frustrating. If this becomes a real problem we’re generally referred to a Speech...

🙂 Many of us have noticed changes in our Speech…it can be embarrassing and frus...

•16 days ago

Opsoclonus Myoclonus Ataxia? Anyone?

Does anyone here have Opsoclonus Myoclonus Ataxia ( OMA)? Diagnosed with this apparently rare (in Adults & in UK). After a near fatal Viral Meningitis in...

Does anyone here have Opsoclonus Myoclonus Ataxia ( OMA)? Diagnosed with this a...

•18 days ago

hip replacement

hi folks, I have FA (still ambulant with aids) and have been told I need a hip replacement. Does anyone have experience of a hip replacement as an FA sufferer...

hi folks, I have FA (still ambulant with aids) and have been told I need a hip ...

•19 days ago

Sca hast.

Sca.da yorgunluk oluyormu.Dusme . Ayaklara agri.

Sca.da yorgunluk oluyormu.Dusme . Ayaklara agri.

•23 days ago

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New book by Ataxian published yesterday!

Find out more and order your copy at https://disabilityisotherpeople.com/

Find out more and order your copy at https://disabilityisotherpeople.com/

•26 days ago

Turkey

Is there anyone in the group from Turkey?

Is there anyone in the group from Turkey?

•27 days ago

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thanks!

Thank you to everyone who responded to my question. The variety of opinions from by my specialists was reflected by the community response. I am aware that...

Thank you to everyone who responded to my question. The variety of opinions from...

•27 days ago

alcohol use and cerebellar ataxia

What has been your experience (both personal and advice from your neurologist) regarding moderate (1-7 drinks per week with no more than 2 a day) alcohol...

What has been your experience (both personal and advice from your neurologist) r...

•28 days ago

2008 they were able to reverse SCA 3........

Look at this article, dated back in 2008, https://www.innovations-report.com/life-sciences/a-improved-gene-therapy-treatment-machado-joseph-119799/. 2008? 16...

Look at this article, dated back in 2008, https://www.innovations-report.com/lif...

•1 month ago

Support Groups

Can anyone give me any information about the forthcoming West Country support group listed on Ataxia.uk's website for July please? What areas are covered and...

Can anyone give me any information about the forthcoming West Country support gr...

•1 month ago

How fast does Ataxia normally progress?

Hi all I am having ataxia symptom since around age of 21, was only get it diagnose around age 26, this year i am 32 by the way. My doctor could not diagnose...

Hi all I am having ataxia symptom since around age of 21, was only get it diagn...

•1 month ago

TG6 , gluten ataxia, antibodies and a strict diet

I have been diagnosed with Idiopathic Cerebellum Ataxia for 6 years . My consultant recently arranged for a TG6 test at Sheffield hospital . The result came...

I have been diagnosed with Idiopathic Cerebellum Ataxia for 6 years . My consult...

•1 month ago

Topper Mattress.

Hi folks - which topper mattress would you suggest I buy - thanks,

Hi folks - which topper mattress would you suggest I buy - thanks,

•1 month ago

Which wheelchair?!?

Hello folks, I'm just after some advice. I have been given a manual wheelchair from the NHS but when moving myself it's very slow and find it's easier for...

Hello folks, I'm just after some advice. I have been given a manual wheelchair ...

•1 month ago

Spelling

Hi most of you know i have Antakia after many years of not knows even thinking i m going nuts ,, so lots of scans blood tests lumber puncture thé...

Hi most of you know i have Antakia after many years of not knows even thinkin...

•1 month ago

Exercise machine recommendations?

Hi folks, I’m looking to buy an exercise machine appropriate for my needs. I am very unfit and quite gym-phobic! I have FA and a problem with hip and knee...

Hi folks, I’m looking to buy an exercise machine appropriate for my needs. I am...

•1 month ago

Good specialist experience 😃

I was given the diagnosis of Ataxia two years ago but every other specialist I have seen has queried that along with querying other diagnoses I have had for...

I was given the diagnosis of Ataxia two years ago but every other specialist I h...

•1 month ago

Writing aids advice needed

Hi I was diagnosed with SCA6 in 2021 and gradually my writing has become worse (no surprise). It is still legible (just!) but is getting harder and harder to...

Hi I was diagnosed with SCA6 in 2021 and gradually my writing has become worse ...

•1 month ago

Sheffield referral

Beth has SCA 19/22 diagnosis that is slowly degenerating. I am finding it increasingly frustrating to access appropriate help from professionals who don't have...

Beth has SCA 19/22 diagnosis that is slowly degenerating. I am finding it increa...

•2 months ago

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