Valley’s rare disease patients craving for medical care

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On World Rare Disease Day, the patients from Jammu appealed state government to take care of the patients in Kashmir with rare disorder.
Shivangi, 9, who had come as a guest on the 8th Rare Disease Day held at GB Pant hospital, shared her success story that how, “with the help of the Lysosomal Storage Disorder Society he recovered from the Gaucher Disease.
“If the government of India wants they can easily help the patients of Kashmir, which is their responsibility also,” she said.
Manjit singh the president of the Lysosomal Storage Disorder Society while stressing on the need for early diagnoses of the disease said, “Our patients are doing MBBS, MBA and some are aeronautic engineers, for they were screened early for their diseases and eventually got fine.”
While the patients from Jammu were sharing their stories of recovery, the disheartened parents of the patients of the rare diseases disorder in Kashmir, expressed their anger against the government for returning an unspent amount of 200 crores, meant for the patients suffering from rare disorder, back to the Central government.
“While the children suffering from the rare disorders are craving for proper medical care due to lack of funds, National Health Mission is returning the unspent amount back.”
Under the Rashtriya Bal Swasthya Karikaram, a scheme of the central government, meant for the early detection and intervention of four problems associated with children in the age group of 0-18 years. These include defects at births, deficiencies and development delay including disabilities. But the Scheme has failed to take off in Kashmir.
Last year, also, the NHM returned an unspent fund of 1.62 crores, meant for the patients with rare disorder, to the Indian government.
The parents of many LSD patients, who attended the function at GB pant hospital lamented that they cannot arrange the money for the treatment of their children.
“We don’t have societies like Lysosomal Storage Disorder that can help us in buying medicines. The medicines for the patients come very expensive. No government, no NGO is coming forward to help us,” they said.
Head, and prof Pediatrics at GB Pant hospital Dr Muzzafar Jan said, “Rare disease disorder is not that rare, we do see patients coming to us with rare disorders. There is a dire need to screen these patients early.”
Wanbal residents protest against drainage failure
Appeal authorities to redress their grievance
Srinagar, Apr 20: The residents of Alnoor colony Wanbal Thursday staged ‘dharna’ against the authorities for failing to provide drainage system in their area’.
The residents blocked the road which resulted in the traffic chaos in the area.
Witnesses said that the vehicles in large number remain stranded on the roads due to the protest staged by the residents in the area.
The residents according to the KNS correspondent said that the authorities have failed to provide them a proper drainage system, which has resulted in immense hardships to them.
“We time and again appeal the higher ups to provide proper drainage system in the area so that the residents here could feel a sigh of relief,” they said.
They said that with failing to pay heed over their sufferings, the authorities are ignoring their plights.
They later appealed to the higher ups to look into the matter and redress their genuine grievances at earliest. (KNS)

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