Chennai: “Gaucher disease is a serious condition and the life of patients is often debilitating. But the good news is that the treatment is available for the disorder through which patients can lead an almost normal life,” said Institute of Child Health Director Dr A T Arasar Seeralar.
In the backdrop of International Gaucher Day, Lysosomal Storage Disorders Support Society (LSDSS), a patient group association for Lysosomal Storage Disorders (LSDs) organised a Gaucher awareness event here on Saturday.
“Since there are many symptoms, there is often a delay in diagnosis and treatment. It is very important to understand that timely treatment is crucial so that the patients can lead a quality life. The onus then lies on the medical fraternity and the medical education system to ensure that the treating physicians are able to diagnose the disorder at the right time,” said genetics specialist Dr Sujatha Jegadeesh.
The Tamilnadu government has formed the State Technical Committee (STC) which has identified 27 patients for treatment. “Unfortunately, 10 patients out of them have already lost their lives due to non availability of treatment. Despite this, there has been no headway in the processing of applications at the Centre. Moreover, the Rs 100 crore corpus fund still remains unutilised,” claimed a LSDSS representative.
Actor Karthi Sivakumar, MediScan director Dr S Suresh and senior advocate V Ramesh participated.
The event also provided a platform for the patients to discuss their individual challenges and journey. It served as an opportunity for them wherein they were able to draw inspiration from each other’s struggles and the positive stories.