Dr. Surekha Ramachandran, mother of a young woman with Down Syndrome and Chairperson of the Down Syndrome Federation of India sheds light on the myths and misconceptions about persons with Down Syndrome . And a message to all parents on World Down Syndrome Day.
PatientsEngage spoke with Dr. Surekha Ramachandran, founder of Down Syndrome Federation of India. Established in the year 1984, with 6 children, DSFI today serves innumerable children not only around India, but also the Middle East…
Mr Manjit Singh, President Lysosomal Storage Disorders Support Society, shares some salient points about the rare disease and about the activities of the organisation, LSDSS. The LSDSS is a national level society with more than 400 patients as members who are represented by elected parents as office bearers, across India. The sole motive of the organisation is to spread awareness about this rare disease as also to help each other in availing of the best facilities available. What are Lysosomal…
Vijay Nallawala who has been running a peer support group for persons with Bipolar Disorder and their caregivers, talks about the upcoming Bipolar disorder conference in Mumbai and the value of peer support communities. Bipolar Disorder, previously known as manic-depressive illness, is a brain disorder that causes unusual shifts in mood, energy, activity levels, and the ability to carry out tasks. Well, that definition does not adequately bring across what a person struggling with it has…
Worldwide 850 million people suffer from some form of kidney disease. Kidney diseases are also one of the leading causes of death worldwide, estimated to be 2.4 million deaths per year. Dr. Rajesh Kumar, a Kidney Specialist and Transplant Surgeon from Mumbai helps explain the misconceptions around kidney health. PatientsEngage asked Dr. Rajesh Kumar about common beliefs on Kidney health: I must drink 8 glasses of water daily to keep my kidneys healthy and get rid of toxins. One to 1.5…
For International Women's Day, in line with the UN Women’s theme for 2019 we highlight a few women innovators and social entrepreneurs who have contributed to "Think equal, Build smart & Innovate for a change." We asked these three women entrepreneurs and innovators what drove the innovation and how it benefits the community. Aditi Gupta, Founder - Menstrupedia Making it cool for young girls to talk about menstruation We created Menstrupedia to fight the widespread unawareness…
Alive is an initiative to engage undertrials in prisons in creative projects through colours and craft sessions, a therapeutic experience which has immensely helped the inmates relieve stress and find joy and happiness. Editor's Note: While this may not seem at first like an article on health, we felt that this project demonstrates effectively the therapeutic effect of art and colouring and it is easy to adopt. So we spoke with Renelle Snelleksz, the force behind Project Alive. Tell us about…
Google launches new Android apps for the deaf and hearing impaired community. R. Radha who lost her hearing a couple of years back and her family tried out the app and shared their feedback. According to WHO, over 5% of the world's population (466 million people) has disabling hearing loss (432 million adults and 34 million children). In light of this, Google recently launched two mobile apps on Android - Live Transcribe and Sound Amplifier. These are aimed at the millions of people…
The theme for Rare Disease Day 2019 is 'Bridging health and social care'. We asked people from the rare disease community (patients and family members) in India what services they would like to see improvement in? And their biggest wish for 2019. Here is what they had to say. Prasanna Shirol, Co-founder ORDI and father of child with Pompe disease would like the following policy changes from the government Compulsory New born screening in the country The supportive care is also included in all…
Dr. Megha Sharda shares insights on the impact of music on individuals on the autism spectrum based on a research project conducted at University of Montreal and McGill University. Tell us about your study on the impact of music on individuals on the autism spectrum. What kind of music was used? How did you select participants and remove bias in selection Music is an area of strength in individuals on the autism spectrum, but until now we did not have neuroscientific evidence supporting its…
