Immune to pain: Telangana has 70 cases of rare disease

HYDERABAD: Saba was four-years-old when her father Syed Sanaullah came to a definitive conclusion that Saba does not feel any kind of pain. It might sound like a good thing, but she had walked back home with a broken leg after a fall that day, and being immune to pain had put Saba in life-threatening situations on several occasions. It is a condition known as congenital insensitivity to pain with anhidrosis and is one of the rarest of the 7,000 rare diseases documented across the globe. Interestingly, Telangana has a high count of patients with this rarest of rare disease, with 70 having been documented. The disease occurs in one among a population of 2 crore, said Sanaullah, who is also a management committee member of Indian Organization of Rare Diseases (IORD).

“Since such kids do not feel pain, the first signs are seen when they start developing teeth and start chewing their own fingers. Our body has a reflex action to pain but since these kids do not feel pain, they keep chewing even when the fingers bleed,” he explained.

Saba was participating in an interactive meet of patients with rare diseases organised to mark the ‘World Rare Diseases Day’ on Sunday. A total of 120 patients with rare diseases participated in the meet held in the city. The rare diseases these patients suffer from ranges from thalassaemia, sickle-cell anaemia, ataxia, lysosomal storage disorder, congenital insensitivity to pain (rarest of rare), aplastic anaemia, muscular dystrophy, multiple sclerosis and sweet syndrome among others.

Majority of the diseases do not have any prescribed drugs and for the ones which have a possible medication, the drugs are exorbitantly priced, said Mohd. Naseeruddin Aslam, who has a 30-year-old son suffering from multiple sclerosis. “There is a single medicine (pill) that is used for preventing the progression of the disease and it costs Rs 50,000 for a single pill. I have been giving it to my son each month ever since he developed the disease (after completing engineering). The disease has still progressed from not being able to walk to not being able to swallow anything. There is no other drug available for the disease,” said Aslam.