Parents and caretakers of more than 200 children with rare diseases have exhorted the government to extend financial support as medication being prescribed for their wards was priced high.
Speaking on occasion of World Rare Diseases Day 2014 at Nimhans here on Friday, they said each family spends more than Rs one crore annually on medication for those suffering from Lysosomal Storage Disorders (LSD).
Sonu Pandit, a parent of children with LSD, MPS2, explained that medicines had to be imported and they were highly priced.
“I have two sons with the same condition and the dosage of medication has to be increased proportionate to the weight of the child. A handful of us get financial aid while others have to shell out from their pockets. For a person from humble background like me, it is extremely tough,” he said.
Sandeep Jain, father of 5-year-old Vedika, who suffers from MPS6, said his child had to be administered injections every fortnight.
“Each costs Rs 2.50 lakh. It is expensive,” he added. “Since the number of patients with the problem is low, the government must help us,” he said adding he hailed from northeastern part where there were no doctors to treat them.
Also, professionals who were present at Nimhans voiced the importance of early diagnosis in these cases. Indira Gandhi Institute of Child Health Director Dr Premalata said in most cases, the diseases are not diagnosed.
“In others, even if diagnosed, they do not know where to refer the patient to.” Lysosomal Storage Disorders are group of 45 rare, genetic disorders that occur due to deficiency of specific enzymes in lysosomes of cells.
The programme was organised by Lysosomal Storage Disorders Support Society.
Deccan Herald is on WhatsApp Channels| Join now for Breaking News & Editor's Picks