Maldivian child receives rare disease treatment in India

A Maldivian child has been given a new experimental treatment in India to cure the genetic disorder known as Hyper IgD Syndrome.

According to the Indian news outlet "The Hindu," the treatment for the disorder was administered at Children's Rainbow Hospital, marking the first time it has been provided in India. The medication utilized for the treatment is Canakinumab.

The rare genetic disorder weakens the immune system, and it presents symptoms such as recurrent fever, joint inflammation, and abdominal pain. Diagnosing the disorder can be challenging, and in the case of the 4-year-old girl currently receiving treatment, she was initially diagnosed at only 6 months of age.

Dr. Chandhrika Bhatt, the treating physician, mentioned to Indian newspapers that initially, the doctors believed that the girl had a typical infection, leading them to administer antibiotics as a treatment.

Dr. Bhatt emphasized that the child undergoing treatment experienced high fever and consistently had low levels of hemoglobin. While the normal hemoglobin level is around 12, the patient's hemoglobin levels dropped to as low as 3 or 4.

Dr. Bhatt said that diagnosing the child was extremely challenging due to her weakened immune system and after consulting with rheumatology specialists and conducting genetic tests that an accurate diagnosis was made.

Dr. Bhatt added that after the diagnosis, it was discovered that the required treatment for IgD was not available in India. However, through her research, she found that Canakinumab had been effectively used to treat IgD in other parts of the world. Subsequently, the medicine had to be imported from abroad. As soon as the medicine arrived, treatment commenced, and the doctor noted a significant improvement in the child's condition. The frequency of fever episodes has substantially decreased, raising hope for the child to regain a normal childhood.

The doctor believes that this successful treatment is a relief for other patients suffering from this disorder.

The Maldivian child has undergone three doses of the medicine thus far, and it is anticipated that a total of six doses will be required to complete the treatment.