Information for Adults
Whether you have been diagnosed with an adult onset form of Centronuclear or Myotubular Myopathy or are in transitory period from being cared for as a child to making your way in the world as an adult, this page has been set up with you in mind.
Often adults are not just dealing with getting a diagnosis, they are dealing with jobs, families, bills and mortgages. They may be concerned that they have passed the condition to their children or getting a diagnosis may suddenly have brought to a screeching halt their dream of having a family. In addition they may have been told there is no one else with the condition or very few with it, that not enough information is known to give them a prognosis and that there is no treatment for their illness. Suddenly, as well as dealing with the issues that all adults face, they are dealing with the added burden of having a disability and worries about how they will deal with every day issues.
The resources section of this website contains much information for anyone with a diagnosis of cnm / mtm but the information detailed below may be of particular interest to adults.
We also advise adults to read the stories of affected adults on this website and our genetic testing page.
Access to Work
The Access to Work Scheme can help you if your health or disability affects the way you do your job. It gives you and your employer advice and support with extra costs which may arise because of your needs.
It might pay towards the equipment you need at work, adapting premises to meet your needs, or a support worker. It can also pay towards the cost of getting to work if you cannot use public transport.
If you need a communicator at job interviews, Access to Work may be available for this too.
Adult Self Management Pack
The Muscular Dystrophy Campaign has produced a self management pack which contains a wealth of information relevant to anyone diagnosed with muscle disease as an adult. It includes information about how to access services and prepare for appointments, as well as advice about finances, employment, exercise, respite and much more. The pack comprises an A4 folder with factsheets, a small appointment diary and a medical alert card.
To order you copy, visit the Muscular Dystrophy Campaign website.
The Citizens Advice service provides free, independent, confidential and impartial advice to everyone on their rights and responsibilities. It values diversity, promotes equality and challenges discrimination.
The service aims to provide the advice people need for the problems they face
and to improve the policies and practices that affect people's lives.
The charity offers advice on benefits,
discrimination and protection in the workplace, access to transport, and sickness at work.
Contact a Family
Contact a Family provide a wealth of information including the document 'Preparing for Adult Life and Transition'.
DirectGov is the UK government website which details public services all in one place. The website has a section on disability which covers employment, financial support, education and learning, rights and obligations, motoring and transport, home and housing, health and support, holidays and breaks and the
Experts Patients Programme
The Expert Patients Programme provides free self-management courses providing tools and techniques to help you to take control of your health and manage your condition better on a daily basis.
Expert Patients Programme courses are typically delivered over six weekly sessions of 2 1/2 hours by tutors also living with a long-term health condition. The aim of all courses is to give people the confidence to take more responsibility and self-manage their health, while encouraging them to work collaboratively with health and social care professionals.
The Neuromuscular Centre
The Neuromuscular Centre (NMC) provides a range of unique services and specialist advice with the sole aim of improving the quality of life for adults with neuromuscular conditions.
The NMC is largely run by people with neuromuscular conditions. A physiotherapy service provides ongoing treatment where the NHS does not and a commercially successful social enterprise - NMC Design and Print - aims to generate a surplus to re-invest in the work of NMC helping others with the condition.
The centre is fully accessible and has care and support staff to provide essential help, enabling people to train or work as independently as possible.
TREAT - NMD YouTube Channel
As part of its science communication work, TREAT-NMD has made a number of films of patients talking about their daily lives. The videos were put together by the Policy, Ethics and Life Sciences (PEALS) Research Centre at Newcastle University.
TREAT-NMD hopes the videos of patients talking about the issues they face every day will be useful for patient organisations, researchers and clinicians, for awareness raising and communication.
Disability in the Media