Dizziness and Balance Problems in Mitochondrial Disease

What is this study about?

Different parts of the body can affect how well we balance and mitochondrial disease can affect these different parts.  It can therefore be difficult for medical professionals to identify the cause of these balance problems for each person. 

A recent study found problems with the inner ear system were a common cause of dizziness and unsteadiness. This is the first time this has been shown in a large group of people with mitochondrial disease. We know from research that physiotherapy for inner ear problems can reduce falls and improve balance. Patients with mitochondrial disease could therefore have an important opportunity to access targeted physiotherapy to improve symptoms and quality of life.

The diagnosis of the cause of dizziness or unsteadiness can be complicated in people with mitochondrial disease. We have developed a diagnosis tool as a framework to guide assessment and treatment.  This framework could help doctors and physiotherapists identify the cause of balance problems and allow quick access to rehabilitation.

This study will further develop and refine this framework in collaboration with patients and experts.  It will then be tested with 100 patients to ensure it reliably guides decisions, so it can then be used more widely to help people with mitochondrial disease.

Who can take part? 

People with a confirmed diagnosis of mitochondrial disease, aged over 16 years old can take part. 

What's involved in taking part?

Before we test the framework, we want to hear how people with mitochondrial disease describe their dizziness or balance problems.

We are running a group at The National Hospital for Neurology on Thursday 30th May 2019 from 1:30-2:30pm.

We would like people with a confirmed diagnosis of mitochondrial disease who have experienced or continue to experience dizziness or balance problems to contact us if they are interested in attending the group.

Are there any risks?

There are no risks with either stage of this study. 

Who will benefit?

There is no direct benefit to you taking part in the study.  However, by developing and testing this framework it is hoped that people with dizziness and balance problems will be able to access targeted therapy intervention more easily.  This will then help to reduce symptoms, improve balance and safety, reduce falls and improve quality of life.

How do I find out more?

If you think you are interested, or would like to know more, please contact the research team directly on:

Research physiotherapist: Amanda Male

Tel: 0203 448 83194

Email: [email protected]