THOOTHUKUDI: The family of a 17-year-old girl suffering from a rare disease known as PAPA syndrome has appealed to Tamil Nadu Chief Minister MK Stalin recently for financial assistance to access medical treatment, as there is no definitive cure for the condition.
PAPA syndrome (Pyogenic Arthritis, Pyoderma gangrenosum, and Acne) is a rare, inherited genetic disorder.
The girl, S. Shenbagavalli (17), is the daughter of Sankar and Jothilakshmi. Owing to her deteriorating health, Shenbagavalli was forced to discontinue her college education. Sankar had appealed to the Chief Minister after his petitions to officials made no headway.
Explaining her condition, Sankar said his daughter has been suffering since childhood from severe swelling in bone joints and painful sores all over her body. “She develops heat boils on the skin, which later turn into sores and start bleeding. She is in constant pain and needs continuous medical care,” he told TNIE.
Doctors have prescribed medicines to treat symptoms resembling arthritis, diabetes and related complications. However, the swelling keeps recurring and the sores continue to bleed. Sankar said multiple surgeries were performed on both her knee joints and later on her right and left hands, costing the family several lakhs.
Recounting the ordeal, Sankar said his daughter cries in pain day and night. Any medication, he added, has to be administered only after consultations involving dermatology, rheumatology, haematology and diabetology specialists.
Doctors at the Christian Medical College (CMC), Vellore, identified Shenbagavalli’s condition as PAPA syndrome in 2021. Though incurable, doctors referred her to a private hospital in Delhi.
“As daily wage labourers, we cannot afford travel or medicines. We are deeply in debt,” he said, urging the state government to extend support for his daughter’s treatment.