Experts decry lack of facilities for rare diseases’ treatment in JK

President of Lysosomal Storage Disorder, Manjit Singh informed that Lysosomal Storage Disorder has started the project in all the three regions; Jammu and Kashmir and Ladakh.

SHAVVALI FATIMA
Srinagar, Publish Date: Apr 21 2017 1:20AM | Updated Date: Apr 21 2017 1:20AM
Experts decry lack of facilities for rare diseases’ treatment in JKRepresentational Pic

Voicing concern over lack of diagnostic centres for rare diseases treatment in the state, experts on Thursday maintained that absence of proper facilities and lack of awareness leads to misdiagnosis and delayed treatment of patients.

Commemorating Rare Disease Day at GB Pant Hospital here, they maintained that research can help to save the patients suffering with rare diseases. 

Speaking on the occasion, Dr Abdus Sami said that the further research will enable doctors to give a correct diagnosis, lead to the development of new innovative treatments and even reduce costs for healthcare systems besides improving quality of life of patients and their families. He said that in J&K, some cases of rare disease have also been reported.

President of Lysosomal Storage Disorder, Manjit Singh informed that Lysosomal Storage Disorder has started the project in all the three regions; Jammu and Kashmir and Ladakh.

“There are lot of patients who suffer from rare disease. We want to raise awareness among patients. There could be more than 20,000 children in India who suffer Lysosomal Storage Disorder sufferer. But they all remain undiagnosed,” he said.

He stressed that genetic testing should be made available in all the hospitals. “Our objective is that all the eligible children who are not undergoing treatment should be given helped a priority so that they are able to go through treatment and purchase medicines,” he said.

“We would write to the State Government and request them that we need to have a diagnostic centre in Jammu and Kashmir,” he said.

Shivanjali, a patient from Kashmir shared her story and expressed how she would like to see other patients to get treatment like she is undergoing treatment from a long time herself. “There are ten more patients present in this event and if the government wishes they could help them too,” she added.

Gowhar, a mother of a two year old baby from Pattan in North Kashmir’s Baramulla district expressed her helplessness in treating her baby.

“My child is not getting treatment but I thank the doctors who look after her. The treatment is very expensive. I am sure the eyes of the government are not open yet. Other children including my daughter are suffering. I am not here to fight an election but to save the lives of our children,” she said.

Dr Monjori Mitra who moderated a scientific session said that fifty percent of rare diseases affect children.