Are you aware of this rare?
Rare neurological disease Ataxia – Campaign by patient advocate Taryn Cotton for Ataxia UK
Ataxia is a rare neurological disease which effects mainly balance. However, ataxia can effect many other areas of the body such as the eyes, heart, and ears. This rare disease also causes tremors, deformities, scoliosis, coordination problems, and chronic pain.
About Taryn
Earlier this week I had the pleasure of meeting Taryn who has recently moved back to Sunderland. It is thanks to our Trustee and partner Alan Thomas that we were put in touch with each other. This means that we can help and support each other with our advocacy work.
Taryn has Cerebellar Ataxia which is a disorder that occurs when the cerebellum becomes inflamed or damaged. The cerebellum is the area of the brain responsible for controlling gait and muscle coordination. The term ataxia refers to a lack of fine control of voluntary movements.
Taryn is a volunteer for Ataxia UK and she is often busy campaigning and raising awareness. The campaign that we discuss here is for International Ataxia Awareness Day that is on 25th September. #IAAD2021
Taryn is delivering the Ataxia UKs medical guidelines to her GP in Sunderland for the campaign. Educating doctors is important to help this rare condition, ataxia, get recognised. Knowing about the disease can help people with symptoms to get noticed sooner… and diagnosed quicker.
Ataxia is an umbrella term for a group of neurological disorders that affect balance, coordination and speech. Some types of ataxia such as Friedreich’s ataxia and the spinocerebellar ataxias are inherited, meaning they are caused by genes passed on by parents to their children. When ataxia is not inherited there can be a number of different causes, identified (brain damage, diet, drug side effects) or not (idiopathic).
https://www.ataxia.org.uk/about-ataxia-uk/types-of-ataxia/
Why raise awareness? Misdiagnosis of rare neurological disease Ataxia is a problem!
Ataxia is Latin and means lack of order. Ataxia is similar to Parkinson’s, MS and sometimes Huntington’s. Taryn is taking part in a campaign run by Ataxia uk charity to speed up diagnosis of Ataxia. Many people are often misdiagnosed!
Part of the campaign involves fundraising to help research into Ataxia. Taryn has asked us to help her achieve this. Research can help in many ways including making the diagnostic process better. By improving diagnosis less people will go misdiagnosed.
Fundraising
ATAXIA AWARENESS AND CAMPAIGNING via Ataxia UK
Rare neurological disease – #Ataxia #AwarenessCampaign
Tweet
Research can help in many ways including making the diagnostic process better. By improving diagnosis less people will go misdiagnosed.
@AtaxiaUK #IAAD21 #raredisease
To find out more information on the different types of ataxias, please take a look at this booklet:
‘Ataxia: what’s that?’ booklet by Ataxia UK
Ataxia UK is a Charity registered in Scotland (SC040607) & England & Wales (1102391); & Limited Company (4974832)
Registered Office: Ataxia UK, 12 Broadbent Close, London, N6 5JW
Header image credit –
#FibroFlutters supporting Taryn Cotton a #patientadvocate and #volunteer with Ataxia UK for International Ataxia Awareness Day that is on 25th September. #IAAD2021
Flutters and Strutters
FibroFlutters and ZebraStrutters
We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.
The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.
Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients
Follow us
SYNAPSE Powered by The Synergist.
The global Patient Engagement map and network
Find everything about patient engagement and make your content available to the community.
The UK’s First Network of Connected Community Maps by It’s A Doddle
Incorporated under the Companies Act 2006 as a private company, that the company is limited by guarantee, and the situation of its registered office is in England and Wales. Reg. No. 14065901