Living with muscular dystrophy can affect different parts of everyday life. Changes in muscle strength and mobility may influence how a person moves, studies, works, communicates, participates in social activities or manages daily tasks.

However, muscular dystrophy does not define a person’s abilities, ambitions or value. With appropriate support, information, adaptations and opportunities, people living with muscular dystrophy can participate meaningfully in their families, communities, education, employment and wider society.

At The Muscular Dystrophy Campaign Nigeria (TMDCN), we believe that people affected by muscular dystrophy should be supported to live with dignity, make informed choices and achieve as much independence as possible.

Understanding your condition

Muscular dystrophy refers to a group of genetic conditions that cause progressive muscle weakness and can affect people differently.

Understanding your particular condition can help you and your family make informed decisions about care and daily life. If you or someone you care for has been diagnosed with muscular dystrophy, it is important to work with appropriate healthcare professionals and seek reliable information about the condition.

You may also need support as your needs change over time. Regular communication with your healthcare team can help identify new challenges and appropriate ways of managing them.

Managing everyday life

Everyday activities can sometimes require more time, energy or assistance. Simple adaptations and the right equipment can help make daily life safer and more manageable.

Depending on individual needs, support may include:

• Mobility aids such as wheelchairs and other assistive devices
• Physiotherapy and appropriate exercise or movement programmes
• Occupational therapy to support independence in daily activities
• Adaptations at home, school or work
• Assistance with personal care and daily activities
• Support with positioning, transfers and mobility
• Appropriate nutritional, respiratory or cardiac care where required

The right support will vary from person to person. Always seek professional advice where medical or rehabilitation decisions are involved.

Education and employment

A diagnosis of muscular dystrophy should not prevent a person from learning, developing skills or pursuing a career.

Children and young people may need reasonable adjustments, accessible learning environments and support to participate fully in education. Adults may benefit from workplace adjustments, flexible working arrangements, assistive technology or career guidance.

TMDCN advocates for inclusion and equal opportunities so that people living with muscular dystrophy can contribute their skills and talents without unnecessary barriers.

Emotional wellbeing

Living with a long-term condition can bring emotional and psychological challenges. Changes in mobility, increasing dependence on others, uncertainty about the future, social isolation and financial pressures can all affect wellbeing.

It is important to talk about these experiences rather than facing them alone.

Support from family, friends, peers, healthcare professionals, counsellors or other appropriate services can be valuable. Connecting with others who understand the experience of living with muscular dystrophy can also provide encouragement and a sense of community.

Family and carers

Muscular dystrophy can affect the whole family.

Parents, spouses, relatives and other carers may provide significant practical and emotional support. They may also need information, guidance, respite and support for their own wellbeing.

At TMDCN, we recognise that supporting the person living with muscular dystrophy also means recognising the needs of those who support them.

Building independence

Independence does not necessarily mean doing everything without assistance. It can mean having the choice, support and appropriate equipment needed to participate in everyday life.

For some people, independence may involve using a wheelchair or other mobility equipment. For others, it may involve adapting their home, using assistive technology, receiving personal assistance or finding ways to continue education or employment.

We encourage people living with muscular dystrophy to identify what matters most to them and explore appropriate support that can help them achieve their goals.

Staying connected

Isolation can be a significant challenge when living with a disability or long-term condition. Staying connected with family, friends, community organisations and others with similar experiences can provide practical and emotional support.

TMDCN’s TMDCN Connect Network provides an opportunity for people affected by muscular dystrophy and related neuromuscular conditions to connect, share experiences and support one another.

Accessing support in Nigeria

Access to specialist neuromuscular care and rehabilitation services can be challenging in Nigeria. Depending on where you live, you may experience difficulties accessing specialist healthcare professionals, diagnostic services, physiotherapy, occupational therapy, assistive equipment or other forms of support.

TMDCN works to help bridge some of these gaps through awareness, education, support, signposting, advocacy, community engagement and collaboration with healthcare professionals and other organisations.

Where we cannot provide a particular service directly, we may help connect individuals and families with relevant sources of information or support where possible.

You are not alone

A diagnosis of muscular dystrophy can bring uncertainty, but you do not have to navigate every challenge alone.

Whether you are living with muscular dystrophy, caring for someone affected, supporting a family member or looking for information, reliable information and the right support can make a difference.

TMDCN is committed to building a more informed, inclusive and supportive environment for people living with muscular dystrophy and related neuromuscular conditions in Nigeria.

Need support or information?

If you or someone you care for is affected by muscular dystrophy, you can contact TMDCN to learn more about available support, information, signposting and opportunities to connect with our community.