Rare Diseases affect thousands of families in India, and due to the snail’s pace of innovation and research in the country, families often have to watch their loved ones suffer, with many eventually succumbing to their disease
Her daughter Kusuma, was only three-years-old when Sudha Rani noticed a boil on her head. Within a few weeks, the little girl’s entire body had erupted in them. Sudha took Kusuma to various doctors across the city, but everyone was stumped, especially when her body began to produce bone in the place of muscle. Even a slight soft tissue injury would provoke the body to produce more bone.
Eventually, doctors at MS Ramaiah Hospital diagnosed what was wrong with the child: Kusuma was suffering from Fibrodysplasia Ossificans Progressiva (FOP), commonly known as the ‘Stoneman’s Disease’ because of the body’s propensity to turns itself into a mass of bone. There is no treatment for FOP, a disease of which only 700 cases have ever been confirmed globally. FOP is a Rare Disease.
Kusuma is going to celebrate her fifth birthday in August, but her parents have no reason to cheer because they know that even though there are clinical trials in the US and Europe, none may have results soon enough to save their baby girl.
The costs of taking care of Kusuma are prohibitive: “A few well-wishers have gifted a wheelchair so she can go to school. That