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MDUK launches Fatigue Management handbook to support people living with neuromuscular conditions

22 July 2022

We’re delighted to announce that our new resource, ‘Fatigue management for people with neuromuscular conditions’, is available to download now.

Fatigue is a very common symptom that so many people with neuromuscular conditions experience. Coupled with a lack of understanding and support for this condition, it can be extremely challenging to live with.

Our new resource is designed to help you understand and manage your symptoms, offering information, identifying potential triggers and providing fatigue management techniques.

“Documents such as this handbook are so helpful for educating patients. It gives loads of information on so many small ways we can manage our lives and symptoms”

Dymphna Kennedy, who lives with mitochondrial disease.

Now 55-years-old, Dymphna comes from a large Irish family who are affected by mitochondrial disease.

Mitochondrial disease occurs when the small structures inside our cells that convert food and oxygen into energy fail. It can affect many different parts of the body, particularly those that require a lot of energy such as muscle, brain, nerve, heart, liver and pancreas.

“Growing up, my family joked that we had what we would call “the lazy gene” because we got tired very quickly after doing things that others thought were simple and easy. Often, I would find it hard to gather enough energy to do anything and my fatigue would mean that my muscles would feel painful and tremble.”

“Having access to resources like this handbook is a big key to helping myself and other members of my family, and I think it would be really helpful for many other people with muscle-wasting conditions.”

A common experience of people living with fatigue is a lack of medical support.

“The support I’ve received for my fatigue has been pretty scarce over the years. Previously, I didn’t feel like I had adequate support with fatigue from either healthcare or society in general. In the past, I have felt like my GP just wrote off my fatigue as a fact of general life and I didn’t receive any recommendations or advice from them to help manage my symptoms,” added Dymphna.

“It’s so important for more people to get on board with using this document and other resources as I think it’s got such great potential to be helpful.”

On Friday 15 July, we were joined by Neuromuscular Care Advisors Pam Appleton and Andy Rose, as well as expert patient, Munira Pirmohamed for our Fatigue MDUK Muscles Matter 2022 seminar. The panel discussed the causes of fatigue, provided tips and ideas for managing fatigue at home and work and launched the resource.

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