Lysosomal Storage Disorders Support Society (LSDSS) organised an event to spread awareness regarding Gaucher as a rare disease
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 in Chennai. The aim was to raise awareness about Gaucher as a disease and its symptoms, support the Gaucher community at large and throw light on the developments at the policy level. Patients in Chennai suffering from Gaucher, eminent doctors treating LSD patients-Dr.ArasarSeeralar, (Director of Institute of Child Health (ICH)), Dr. S Suresh (Director, MediScan), Dr.SujathaJegadeesh(Genetics Specialist, Mediscan)and Senior Advocate V Ramesh who has taken up the cause of LSD patients in the High Court of Tamil Naduwere present at the event. Renowned actor Karthik Sivakumar (Karthi) who is the cause ambassador of LSDSS ever since inception was present to motivate the LSD children and parents.
“Gaucher disease is a serious condition and the life of patients is often debilitating. But the good news is that treatment is available for the disorder through which patients can lead an almost normal life. This event is a means to highlight the positive change which timely treatment can bring in the life of a patient”, said Dr. AT ArasarSeeralar, (Director of Institute of Child Health (ICH)).
The Tamil Nadu 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 no 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 utilised. Given this, it is appealed to the central government to take immediate action and also for the state government to be more persuasive to request for funds from the Centre”, said LSDSS representative.
Advocate Ramesh commented, “The underlying point is that we cannot afford to lose any more patients and now it has become absolutely imperative for effective government intervention in order to help patients to have access to treatment.For the same, we are moving the Honourable High Court for appropriate immediate relief to prevent further loss of life.”
Gaucher’s disease is a genetic condition wherein fat gets deposited and build up in different organs and bones of the body. The disorder is a type of Lysosomal Storage Disorders (LSDs) which is a segment of around 50 rare ailments. Explaining about the disorder, Dr. S Suresh (Director, MediScan), said, “People with Gaucher’s disease lack an important enzyme which is responsible for breaking down a specific type of fat molecule. This, thus, leads to accumulation of fat in the cells which manifests in the form of various symptoms like enlargement of spleen, fatigue, bone and joint pain, anaemia etc.”
Dr. Sujatha Jagadeesh added, “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.”
The event was also 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.