A 12-year-old boy from India earned the name "glass bones" due to his fragile bone condition. Suffering from osteogenesis imperfecta, the boy has broken more than 100 bones in his lifetime.
Rohit,12 is from Uttar Pradesh, India, and is suffering from osteogenesis imperfecta, more commonly known as 'brittle bone disease'.
His case is so severe that even the slightest touch can cause one of his bones to break, leaving him in constant pain for most of the day.
The condition has stunted his growth. The 12-year-old only stands 1 foot and 4 inches tall and weighs around four pounds.
The little Rohit relies on his mother to move and is unable to play with friends. His older sister teaches him how to read.
Despite his condition, he is able to complete tasks such as brushing his teeth without assistance and dreams of becoming a singer one day, Mirror reports.
Osteogenesis imperfecta
Osteogenesis imperfecta (OI) or brittle bone occurs in around one in 1 in 10,000 to 20,000 people worldwide. In the U.S., it is estimated that around 25,000 to 50,000 people in the United States have it.
As per John Hopkins Medicine, most babies with OI have a gene defect that affects collagen formation. Children with the condition do not have enough collagen, or their collagen is not working as it should.
There is no cure for osteogenesis imperfecta but those suffering from the condition can seek treatment to help protect and strengthen their bones.
Symptoms of OI include bones that easily break, bone deformities such as bowing of the leg, a barrel-shaped chest, a curved spine, and a triangle-shaped face. They may also have soft, discolored teeth, loose joints, weakness in the muscle, and loose joints.
It has no cure yet but those suffering from the condition must seek treatment to protect and strengthen their bones.
Parents with an OI child are advised to manage the condition by avoiding fractures, and infections. She needs to be picked up, diapered, and dressed very carefully. As the child is on the bed often, the position should be changed throughout the day. It is also best to help the child avoid injuries.
Children with OIs are also vulnerable to colds and other respiratory infections. Doctors advise that the baby with OI should have complete vaccinations. They should also be away from crowds especially when it is the cold or the flu season.
Trial treatments
New treatments are being trialed for OI, but many are not available in the developing world like India where Rohit lives.
According to Daily Mail, there are two main types of drug treatment. One of the treatments slows down the rate of bone loss, while the other one promotes new bones to develop.
In 2019, the European Medicines Agency approved romosozumab, a new type of bone-forming treatment. The drug, named Evenity, blocks sclerostin, a substance that stops new cells from forming.
However, the drug is not for everyone. Doctors warn that Evenity should not be given to patients with a high risk of heart attack or stroke.