International Gaucher Awareness Day celebrated in ChennaiPosted by on 03/10/17
In the backdrop of International Gaucher Day, Lysosomal Storage Disorders Support Society- Tamil Nadu Chapter, a patient group association for Lysosomal Storage Disorders (LSDs) organised aGaucher awareness event in Chennai. The aim was to raise awareness about Gaucheras a disease and its symptoms and to support the LSD community at large. Patients in Tamil Nadu suffering from Gaucher and other Lysosomal storage disorders, eminent doctors treating LSD patients Dr. S Suresh (Director, MediScan) and Dr. Jaya Rekha (Paediatrician) and Senior Advocate V Ramesh who has highlighted the cause of these children in Madras High Court came together to urge the Govt. of Tamil Nadu to provide Enzyme Replacement therapy as well as supportive care for patients in Tamil Nadu with such disorders. Also present during this occasion was renowned actor Karthik Sivakumar (Karthi) who has been the cause ambassador of these children in Tamil Nadu since the past 6 years. There is still a lack of education about LSDs amongst parents, caregivers, healthcare professionals, nursing homes, small and major government hospitals and medical colleges. LSDSS’s efforts with the Govt. of Tamil Nadu Health department and other stakeholders since 2013 to start treatment for the 26 identified children medically examined and confirmed by doctors did not result in any action from the Govt , which made us approach the High Court in Tamil Nadu praying for treatment support, resulting in the Honourable High Court directing the Govt. of Tamil Nadu to constitute a committee of Government, medical and legal experts to recommend the treatment options and rehabilitative and supportive care for patients while directing that treatment should be initiated for the affected children immediately in Govt. Hospitals and Genetic centers. said Mr. Manjit Singh (President LSDSS). Throwing further light on the directive, Advocate V Ramesh said,“Chief Justice Indira Banerjee and Justice M Sundar committee also directed the government that the concerned patients should start receiving available treatment even before the Committee submits its report. There are approximately 50 rare genetic disorders known as Lysosomal Storage Disorders (LSD) and Gaucher is the most common one. Explaining about the disorder, Dr. S Suresh said, People with Gauchers disease lack an important enzyme which breaks down a specific type of fat molecule. Thus, this causes the accumulation of fat in the cells which is then manifested in the form of various symptoms like enlargement of spleen, fatigue, bone and joint pain, anaemia etc. Since the symptoms are varied, it often becomes difficult to diagnose it and the treatment gets delayed. 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. An event like this is a very good way of spreading awareness in this regard. Out of 50 identified Lysosomal storage disorders, Gaucher is one of the 7 rare disorders which are treatable & has definitive treatment approved by US FDA& registered, licensed and available in India. 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.