Zara and Martin both live with Limb-Girdle Muscular Dystrophy (LGMD R9 ) - a rare muscular dystrophy diagnosis that gradually weakens the muscles around the hips and shoulders. The diagnosis affects everyday life, work and family life, but they have chosen to shape their lives actively and with the determination to live it to the fullest.
For Zara, it's about continually finding new ways to cope. Each year requires new acceptance when her body changes, like when her arms get weaker or she can no longer put on a jacket without help. "My brain is constantly working to find new solutions," she says.
Martin has learned that personal assistance is not a loss of independence, but a prerequisite for freedom. "It was hard to admit that I needed help, but it has given me the freedom to live the life I want to live," he says.
Zara has created her own work life as a self-employed webmaster. She works from home and has the opportunity to go to Spain in the winter, where the climate and accessibility are better. "I didn't want to be locked in an office - I wanted to be able to work wherever I wanted," she says.
Martin has had a more challenging path. Several workplaces couldn't accommodate his needs as a wheelchair user, and the municipality talked about early retirement as a way out. But he refused to let his diagnosis define his life. Today, he works at Permobil, where his experience as an power wheelchair user is a strength in combination with his skills. "My disability should adapt to my life - not the other way around," he says.
Zara has a daughter and says she was fine during pregnancy, but has had challenges lifting and playing with her child like other parents. "I can't hug her as hard as I want to," she says. On the other hand, her daughter has found her own role as a "personal assistant" and helps Zara with small everyday tasks.
Martin is also a father and emphasizes that the role of parent requires energy. With the help of his personal assistants, who support him in everything from personal care to driving and practical tasks, he has the freedom to spend his energy where it really matters: on his children, his family, his work and his training.
Even for those closest to you, it can be difficult to fully understand what it feels like to live with a muscular dystrophy diagnosis. And it's not necessary for them to fully understand this or spend energy trying. The important thing is that they are there for you.
Martin says that his family and friends have always been very supportive and that their support has made a huge difference in his everyday life. At the same time, the Danish Muscular Dystrophy Foundation's network has had a very special significance. Through events and user groups, he has met others with exactly the same diagnosis - people who understand how he feels and what it takes to find new ways of living with a diagnosis.
"It has helped me not feel alone in a process where only others with the same diagnosis fully understand what I'm going through," he says.
Zara misses a similar community in Sweden, where services are fewer and often broadly aimed at all neurological diagnoses. She hopes that a network specifically for LGMD can emerge so that she and others can share experiences and support each other.
For Zara and Martin, traveling is a way to create quality of life and freedom. Zara spends the winter months in Spain, where she experiences greater accessibility and socialising. "In Spain, I don't feel like a burden - I feel like a part of society," she says.
Martin has had great experiences traveling to cities like New York, Paris and Malaga, and he smiles at the thought of meeting Zara and her family in Spain. Traveling allows them to choose a setting that suits their needs - and to live an active life without limitations.
Living with muscular dystrophy means being part of a lifelong process where muscles and functions gradually change. It can turn your whole life upside down and requires both acceptance and adaptation. But it is through these phases that many people also become mentally stronger.
Martin describes it as a process of getting to know yourself in new ways. As the body becomes weaker, other aspects can grow stronger - just as one sense sharpens if another disappears. The journey with and against the system, and navigating a society where views and expectations can vary, has given both him and Zara a clear identity and a strong foundation.
For them, it's not about being seen as 'more' or 'less' than others, but about being seen as individuals with drive, joy and ambition - just like everyone else. As Martin says: "I'm Martin and I have a diagnosis, but it doesn't define me."
What is LGMD?
Limb-Girdle Muscular Dystrophy (LGMD R9) is a rare muscular dystrophy that gradually weakens the muscles around the hips and shoulders. Symptoms and progression vary greatly from person to person - even within the same family.
Typical symptoms
Weakening in legs before arms
Frequent falls and difficulty with stairs
Difficulty getting up from the floor
Difficulty lifting the arms
In some types, heart and respiratory muscles are also affected
Progression and follow-up
The progression can be fast or slow depending on the type. Many will eventually need a walking aid or wheelchair. Regular heart and lung checks are recommended.
Source: NHS Inform (UK)