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Despite being a debilitating condition that affects thousands of young boys in India, muscular dystrophy, according to experts, is often not spoken about as much as it should be. Characterised as a group of genetic disorders that weaken the body’s musculoskeletal system, muscular dystrophy leads to progressive muscle degeneration and weakness. According to Dr M Lakshmi Lavanya, consultant neurologist, Kamineni Hospitals, Hyderabad, the condition is caused by mutations in genes responsible for producing proteins that are critical for muscle function.
“Many individuals with the condition face significant physical, emotional, and financial challenges, including limited mobility, dependence on others for daily activities, and a high cost of medical care and equipment. Additionally, the stigma surrounding disabilities and the lack of accessibility to public spaces and transportation make it difficult for individuals with muscular dystrophy to live fulfilling lives,” Dr Lakshmi told indianexpress.com, adding that in simple words, in muscular dystrophy, abnormal genes (mutations) interfere with the production of proteins needed to form healthy muscle.
Types of muscular dystrophy
There are several types of muscular dystrophy, with varying symptoms, age of onset, and progression. The most common forms of muscular dystrophy in India are Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD). “DMD is the most severe form of muscular dystrophy, affecting mainly young boys and causing loss of muscle function in the legs, pelvis, and arms, among other symptoms. BMD, on the other hand, is a milder form that affects both men and women and typically presents later in life,” Dr Lakshmi explained.
Signs and symptoms
Specific signs and symptoms begin at different ages and in different muscle groups, depending on the type of muscular dystrophy. “Signs and symptoms, which typically appear in early childhood, might include frequent falls, difficulty rising from a lying or sitting position, trouble running and jumping, waddling gait, walking on the toes, large calf muscles, muscle pain and stiffness, learning disabilities and delayed growth,” Dr Rashmi Devaraj, MBBS, MD Pediatrics, DM Neurology, Apollo Hospitals, Jayanagar, Bangalore, told indianexpress.com.
According to Dr Devaraj, the complications of progressive muscle weakness include:
Trouble walking: Some people with muscular dystrophy eventually need to use a wheelchair.
Trouble using arms: Shortening of muscles or tendons around joints (contractures).
Breathing problems: Progressive weakness can affect the muscles associated with breathing. People with muscular dystrophy might eventually need to use a breathing assistance device (ventilator), initially at night but possibly also during the day.
Curved spine (Scoliosis): Weakened muscles might be unable to hold the spine straight.
Heart problems: Muscular dystrophy can reduce the efficiency of the heart muscle.
Swallowing problems: If the muscles involved with swallowing are affected, nutritional problems and aspiration pneumonia can develop. Feeding tubes might be an option.
Diagnosis and treatment
Diagnosis of muscular dystrophy can be challenging, as the symptoms are often mistaken for those of other conditions, said Dr Lakshmi. “A definitive diagnosis usually requires genetic testing, which can be expensive and inaccessible in many parts of India. This lack of access to accurate diagnoses and medical care can lead to misdiagnosis and inadequate treatment for those affected by muscular dystrophy,” noted Dr Lakshmi.
Who is more at risk?
Muscular dystrophy occurs in both sexes and in all ages and races. “People with a family history of muscular dystrophy are at higher risk of developing the disease or passing it on to their children with the most common variety, Duchenne, usually occurring in young boys,” said Dr Devaraj, explaining that the women are carriers but are not affected.
“The life span of the severe variety, that is Duchenne muscular dystrophy, is usually limited to the second decade whereas the Becker variant has a life span of 30 to 40 years,” Dr Devaraj added.
However, there is hope for individuals with muscular dystrophy in India. According to Dr Lakshmi, the recent advancements in genetic research and medical technology have led to new treatments and therapies that can slow the progression of the condition and improve quality of life. “Physical therapy, assistive devices, and medication can help individuals with muscular dystrophy maintain mobility and independence for longer periods,” Dr Lakshmi added.
What more should be done?
Stressing that addressing the needs of individuals with muscular dystrophy in India is crucial, experts urge for funding for genetic research, expanding access to medical care and treatments, improving accessibility in public spaces and transportation, and raising awareness about the condition through education and outreach programs. “Moreover, support from the private sector can also play a crucial role in addressing the needs of individuals with muscular dystrophy in India. This can include funding for research and treatment, as well as offering employment opportunities and promoting inclusiveness in the workplace,” Dr Lakshmi said.
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