Living with muscular dystrophy in Nepal
Living with muscular dystrophy in Nepal: improving the quality of life and access to medical care
Nepal, located in south Asia, is situated along the southern slopes of the Himalayan mountains—the highest mountain range in the world. It is home to Mount Everest and the birthplace of the Buddha. For many centuries, a community of people have developed a unique way of life in the diverse regions; a special culture surrounded by sacred nature, many of which predate ancient Hinduism.
Although Nepal has experienced some level of economic growth in the last decade, it is still considered one of the poorest countries in the world. It has among the highest rates of malnutrition, disease, and child mortality. This mortality can be attributed to high poverty rates, limited healthcare access, and a lack of education for much of the community.
It is in Nepal that Nirmal Khadka, who lives with muscular dystrophy (MD) and is a permanent wheelchair-user, has been working to help rare disease patients with MD for more than 15 years. Work which he does as a valued member of the Muscular Dystrophy Organization Nepal (MDON).
What is muscular dystrophy?
Muscular dystrophies are a group of inherited genetic conditions. MD is a progressive condition that over time causes the muscles in the body to weaken. It is caused by mutations in the genes responsible for healthy muscle structure and function. MD often runs in families, but not always.
How does MD progress, and is there a cure?
MD is a progressive disease leading to increased impairment over time. There is currently no cure for MD. Proactive support and therapy long with the use of disability aids are used to manage the symptoms and improve an individual’s mobility and independence for as long as possible.
There are different types of MD, each with varying symptoms.
One of the most common and severe forms of MD, which usually affects males in early childhood, is duchenne MD (DMD). DMD has a high mortality rate and individuals often only live until their 20s or 30s. Myotonic dystrophy is another common form of MD. It can develop at any age and life expectancy may or may not be affected depending on the severity. Other common forms of MD with varying severity and life expectancy include becker MD, facioscapulohumeral MD, lib-girdle MD, oculopharyngeal MD, and emery-dreifuss MD. There are many others.
Muscular Dystrophy Organization Nepal(MDON)
The MDON is a grassroots organisation that was founded to bring together individuals with MD in Banepa, Panauti, Dhulikhel, and surrounding areas in the Kavre district in Nepal. It aims to improve the quality of life of individuals and their families through united support and advocacy. The organisation helps educate individuals with MD and their families about the disease. Information on the latest research, trials and treatments are shared with the community. Physicians, social workers and psychologists also form part of the organisation. The MDON hopes to establish alliances with national and international organisations related to health services and MD.
Improving healthcare services and reach within Nepal.
There is currently no community hospital where Nirmal Khadka lives in Panauti Kavre. New centres would increase the number of regular health screenings, gene testing and physiotherapy for individuals and families affected by MD. Funding would help support the community to establish more medical centres and change the lives of those living with MD and other medical conditions.
Supporting independence and welfare with accessible medical equipment.
Many individuals in Nepal with MD are in desperate need of mobility aids. Many of those who live with MD around the world rely on walking sticks, crutches and wheelchairs which are designed and tailored specifically to promote independence and safety. However, many of those who live in Nepal with the same disease do not have access to these. As part of the MDON’s mission, they hope to organise a manual wheelchair distribution programme. To do this, they desperately need financial support through sponsors and donations.
Supporting the need for work-based training to secure paid work.
The MNON also helps to improve the community’s access to education, including languages such as English, training in computers, sewing and crafts. These classes are intended to help those in the community, including parents of children with MD, to find jobs, generate income and feel part of the working community surrounding them. With greater funding, more resources can be obtained to improve the quality of training available.
Oil painting classes are particularly popular in the community and the results are stunning. The MDON hopes these unique pieces of art will catch the eyes and hearts of individuals around the world and spread awareness of the work of the MDON, the talent of the community, and their need for support. Organised picnics, weekend activities and summer camps are also organised by the community leaders to help individuals with MD and their families to experience fun, social activities and live their lives to their full potential.
Where to donate…
To learn more about MDON or to support their work, please visit https://www.linkedin.com/in/muscular-dystrophy-organization-nepal-5a358066/?originalSubdomain=np .The MNON can also be found on social media with their Facebook page Muscular Dystrophy Organization Nepal which can be accessed through this link: https://bit.ly/3rzevPW
The impact of Covid-19 on the community.
All over the world, underdeveloped countries such as Nepal have been devastated by the impact of Covid-19. Restrictions on travel have seen support from other countries diminish. Unable to cope with patients volumes shortages of essential supplies have been widespread. The economic status of the region means that vast inequalities are experienced. Like many others with rare diseases in the country, individuals with MD are vulnerable and may require increased medical support if they contract the virus, which is of great concern to the MD community.
Support from government and non-government organisations to bridge the gap between communities in poverty and lifesaving treatments and supplies cannot come quick enough.