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Kumari Kunti25-year-old Indian woman with suspected osteogenesis imperfecta
Country:
 India |
Content:
- Kumari Kunti: A Life Bound to Bed
- A Life of Struggles
- Hopes for Treatment
- A Rare Genetic Disorder
- Facing Challenges with Hope
- Raising Awareness
Kumari Kunti: A Life Bound to Bed
Kumari Kunti, a 25-year-old woman from India, suffers from a rare genetic disorder called imperfect osteogenesis, which has caused her height to shrink from 1.22m to 0.6m. She is confined to her bed and completely dependent on her mother. Kumari's condition has progressively worsened over the last decade, causing bone deformities and muscle weakness.
A Life of Struggles
Kumari, who has two brothers and two sisters, first experienced serious health problems in 2007 when her left leg weakened. Despite undergoing surgery to strengthen the limb, she gradually lost the ability to walk. Over time, her legs and arms began to deform, and she eventually became bedridden. Kumari's 60-year-old mother, Devi Tilakva, has become her full-time caregiver.
Hopes for Treatment
Kumari hopes to receive treatment from doctors in one of India's major cities, which could potentially help her regain mobility. However, living in a rural area of Jharkhand, she lacks the financial means for timely medical care. The villagers in the Chatra village have offered support and organized meetings with doctors from larger cities.
A Rare Genetic Disorder
Imperfect osteogenesis, also known as brittle bone disease or osteogenesis imperfecta, is a rare genetic disorder that affects the production of collagen in the body. This results in bone deformities, increased fragility, and muscle weakness. The severity of the disease can vary from mild to life-threatening. Those diagnosed with this condition may experience hundreds of fractures in their lifetime.
Facing Challenges with Hope
Kumari and her mother continue to face financial difficulties and struggle to afford proper nutrition. However, with the support of the villagers and their unwavering faith, they hope for a miracle that can alleviate Kumari's suffering and allow her to walk once again. Dr. Satyendra Singh, a local surgeon, believes Kumari is a severe case of imperfect osteogenesis but believes that medical treatment can provide some relief.
Raising Awareness
Imperfect osteogenesis affects approximately 1 in 15,000 newborns in the United Kingdom. This condition can cause frequent fractures, muscle weakness, hearing loss, joint hypermobility, bone deformities, scoliosis, fragile teeth, short stature, breathing problems, and bruising. Celebrities like Atticus Shaffer, known for his role in the TV series "The Middle," also live with this condition, raising awareness about the challenges faced by individuals with imperfect osteogenesis.
Despite the hardships, Kumari Kunti remains hopeful for a brighter future, where she can regain her mobility and live a fulfilling life.
