Treatment and Care
Although there is currently no cure for ataxia, there are a number of treatments available to help with the symptoms people experience.
Medications are available, for example; for muscle spasms, tremors, bladder problems, abnormal eye movements and depression. Cardiac problems seen in Friedreich’s ataxia are also treatable. Certain types of therapy can also help. Here you can find resources that help manage your symptoms and further explain ataxia to your healthcare professionals.
If you want to access information on the diagnosis and management of ataxia, you can find it in the Ataxia Medical Guidelines. This document was produced by Ataxia UK in collaboration with many ataxia specialists and is aimed at healthcare professionals (eg: neurologists, therapists and other doctors). You can download a copy to take to your doctors, or contact the Ataxia UK Helpline for a printed copy.
We also have produced a summary of the Ataxia Guidelines aimed at GPs (also published in Guidelines, an online resource which summarises clinical guidelines for primary care.)
We recommend that people with progressive ataxia be seen regularly by a neurologist (at least annually), who can monitor the condition and provide help with any new problems that may have emerged. It also provides an opportunity to hear about any new medical advances.
Ataxia UK have opened their accredited Specialist Ataxia Centres in London, Sheffield, Oxford (adults and children), and Children's Centres in Sheffield and London. Specialist neurologists and nurses who have expertise in ataxia hold appointments with people with ataxia, as well as conduct research towards finding treatments and cures. You'll need a referral from your GP or neurologist to attend.
View our list of neurologists with interest in ataxia to access more expertise around the UK. All clinicians included on this list are available through the NHS, and some also run private practices.
We are happy to send an information pack on how to care for people with ataxia to your GP. Please send us an email to firstname.lastname@example.org with your GP's address, if they would like to receive more information from us. Your healthcare professional can also join our Medical Registry, through which they'll receive an e-newsletter full of updates about new treatments and healthcare advice for ataxia.
Patients as well as their healthcare professionals have found our information pack very useful, as Catherine says:
"My GP received a folder with information on ataxia from you, and phoned to say thank you, and to specifically pass on to you how useful it is; he also told me that all the doctors were discussing ataxia and nothing else for a full hour! The surgery is a teaching practice, and he's asked if I can go along and be a teaching patient, to see if the students can diagnose ataxia!"
Healthcare professional Q+As
We have also produced a series of videos interviewing a healthcare specialists about specific symptoms related to their discipline. We currently have videos on ophthalmology and auditory symptoms in Friedreich's ataxia and other ataxias which may be viewed below:
Ataxia Q&A: Eye disorders that occur in patients with Friedreich’s ataxia
Q + A with Fion Bremner, Consultant Ophthalmic Surgeon University College Hospital, the National Hospital for Neurology & Neurosurgery and the Hospital for Tropical Diseases
Ataxia Q&A: Auditory disorders that occur in patients with Friedreich’s ataxia and other ataxias
Q + A with Professor Doris-Eva Bamiou, Professor of Neuroaudiology, The Ear Institute, Faculty of Brain Sciences, University College London
Ataxia Q & A: Cardiac disorders that occur in patients with Friedreich's ataxia
Q + A with Dr Antonis Pantazis, Consultant Cardiologist, Royal Brompton & Harefield NHS Foundation Trust, UK
For information on fluid management when receiving fluids via IV in FA, see our advice leaflet here.
Therapies for ataxia
Physiotherapy and exercise such as swimming may prevent loss of strength and preserve mobility. A speech and language therapist can help with problems involving swallowing and if speech is becoming slurred. If needed, communication aids, such as some computer programmes can be recommended.
An occupational therapist can also be helpful, for example with home adaptations, teaching strategies for daily activities or wheelchair assessments. Ask for a referral from your GP or neurologist to access these services.
Many people with ataxia say it really helps them to meet other people with the condition and realise they're not alone. Ataxia UK’s network of local Branches and Support Groups helps by running events, trips, fun activities, and by providing the opportunity to meet up and socialise. Others keep in touch with one another through our online health community forum (Health Unlocked) or virtual support groups.
Optimal clinical pathway for people in England with rare neurological conditions
Published in 2023, the optimal clinical pathway sets out what good treatment, care and support looks like for people with neurological conditions, from those experiencing the first symptoms, to those that have lived with such conditions for a long time. When Ataxia UK was notified that a pathway was to be created for people with movement disorders, we successfully lobbied for a pathway for people with ataxia to be included. The pathway shows the ideal route to care within the NHS in England, and emphasises the important role of the specialist ataxia centres. The creation of this pathway was overseen by the National Neurosciences Advisory Group (NNAG), with support from NHS England, and input from Ataxia UK and ataxia specialists. For more information, click here.
Ataxia UK's Policies
At Ataxia UK, we are always looking for ways that we can campaign to help improve the healthcare and treatment of people with ataxia. Here you can read about our policy and campaigning work.
We often get asked about our position on stem cell therapy, and you can read our statement on stem cell therapy here. An interesting article on stem cell therapy treatments was recently published here, highlighting some of the concerns around unlicensed stem cell therapy treatments.
How Is Ataxia Diagnosed?
It is sometimes difficult to get a diagnosis of the specific type of ataxia, as there are many different conditions that can seem very similar. Read more about ataxia diagnosis here.
Ataxia’ is an umbrella term for a group of neurological disorders that affect balance, coordination and speech. There are many different types of ataxia that affect people in different ways. Find out more about the different types of ataxia here.
Specialist Ataxia Centres
Given the rarity of ataxia, accessing suitable treatment and care can be a difficult and long-term process. Ataxia UK is combatting this through their Specialist Ataxia Centres, where specialist neurologists are caring for people with ataxia and conducting first-rate research in the field. Click to find out more.
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