Muscular dystrophy is a group of inherited disorders that cause muscle weakness and wasting. These conditions can be debilitating and life-threatening, and there is currently no cure. In Bangladesh, the situation for those with muscular dystrophy is particularly dire. The lack of awareness, resources, and collaboration in the medical community and among the general public is preventing progress in this field and leaving patients suffering from treatmentlessness.
The Formation of a Muscular Dystrophy Association A muscular dystrophy association would be a significant step towards improving the situation for those with these conditions in Bangladesh. The formation of the association would require legal formalities, but it would also provide an opportunity for advocacy, awareness-raising, and collaboration.
Raising Awareness and Educating Policymakers One of the primary goals of a muscular dystrophy association would be to raise awareness and educate policymakers about the importance of neuromuscular diseases. Unfortunately, it can be tough to get the attention of those in positions of power unless there is a strong management and advocacy association in place. The association could provide a platform for advocacy, bringing together patients, doctors, and researchers to share their experiences and highlight the need for more resources and support.
Examples of Existing Muscular Dystrophy Associations
Muscular dystrophy associations can play a crucial role in supporting individuals and families affected by any type of muscular dystrophy. Such organizations provide various programs and services, research, and advocacy to assist those who are impacted by these conditions. There are several successful examples of such associations that can serve as models for the development of a muscular dystrophy association in Bangladesh:
Muscular Dystrophy Canada (MDC) provides support to those affected by neuromuscular disorders, which are health conditions caused by changes in the genetic code or the autoimmune system that impact muscles and nerves. MDC offers programs and services, research, and advocacy to individuals affected by muscular dystrophies and other types of neuromuscular disorders.
The Muscular Dystrophy Association (MDA) in the United States is a 501(c)(3) umbrella organization that supports individuals with neuromuscular diseases. Founded in 1950 by Paul Cohen, who lived with muscular dystrophy, MDA has contributed more than $1 billion to research therapies and cures, including the identification of the dystrophin gene responsible for Duchenne muscular dystrophy. The MDA also provides medical and community services, education, and advocacy.
Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the United States focused on Duchenne muscular dystrophy. PPMD takes a comprehensive approach to fight against the condition by funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options. The organization was founded by parents and grandparents in 1994 and continues to drive efforts to improve treatment, quality of life, and long-term prospects for individuals affected by Duchenne muscular dystrophy.
The Indian Association of Muscular Dystrophy (IAMD) was founded in 1992 by three individuals with muscular dystrophy and a few social workers. The association aims to provide relief and rehabilitation to those with muscular dystrophy in India and to raise public awareness. In 2018, IAMD established the Integrated Muscular Dystrophy Rehabilitation Center in Solan, Himachal Pradesh, to provide comprehensive muscular dystrophy care and management.
Muscular dystrophy associations, like the ones mentioned above and many others across the world, serve as examples of the impact that a muscular dystrophy association can have in improving the lives of those affected by these debilitating conditions. By providing support, advocacy, research, and education, these organizations are making a difference in the lives of individuals and families impacted by muscular dystrophy and other neuromuscular disorders.
Improving Collaboration and Research Another critical aspect of a muscular dystrophy association would be to improve collaboration between patients, doctors, and researchers. Currently, there is a lack of collaboration among those affected by muscular dystrophy and the very few people with expertise in muscular dystrophy. This makes it difficult to proceed with further research, diagnostic facilities, and management schemes. A muscular dystrophy association would provide an opportunity for stakeholders to work together and pool their resources, knowledge, and experience to tackle this complex issue.
Overcoming Barriers to Progress From my limited experience with working in the field, the public perception of muscular dystrophy in Bangladesh is not quite different from that in countries like Canada or the US. People only care about "medicines" and "treatments" for their affected children and do not think about the future. The majority of doctors are occupied with typical conditions and are not interested in learning about new conditions. This lack of understanding and cooperation is a major barrier to progress in this field.
It's not at all incomprehensible that people with muscular dystrophy and their families in Bangladesh focus primarily on access to medicine and treatment, as this is an immediate concern and a basic need. However, creating a muscular dystrophy association can help in overcoming this barrier to progress by addressing the issue from multiple angles. The association can work to raise public awareness and educate the general population about muscular dystrophy, its causes, and the importance of a comprehensive approach to support those affected by it. This can also include advocacy for better access to medical treatment and resources for individuals with muscular dystrophy, as well as promoting research to find new treatments and eventually a cure. By taking a multi-faceted approach, a muscular dystrophy association can help to address the current barriers and work towards a brighter future for individuals affected by muscular dystrophy in Bangladesh.
The Future of Muscular Dystrophy in Bangladesh Without a concerted effort to improve the situation, the number of patients with muscular dystrophy in Bangladesh will continue to rise, and they will continue to suffer from treatmentlessness. It is essential that we start working together now to prevent this from happening. A muscular dystrophy association could be the key to unlocking progress in this field and improving the lives of those affected by muscular dystrophy in Bangladesh.
The need for a muscular dystrophy association in Bangladesh is clear. By raising awareness, educating policymakers, and improving collaboration between patients, doctors, and researchers, we can begin to tackle this complex issue and improve the lives of those affected by muscular dystrophy in Bangladesh.
15 June 2021
Saeed Anwar
Edmonton, Canada