Sharing Experiences in Lysosomal Storage Disorders
Bengaluru and Chennai, India, January 2016
In January 2016 I visited two centres in India. With me were Tanya Collin-Histed, Helen Whitehead from the UK Gauchers Association, Elin Davies, a dear friend and colleague with whom I have worked for over 15 years, and founder and CEO of Aparito, a wearable technology company, and two young type III Gaucher adults, Sara Khan and Radhika Dhayatker.
We first went to Bengaluru, where we were guests of Dr Meenakshi Bhat, a clinical geneticist at the Centre for Human Genetics. Meenakshi has worked with LSD families for many years. I had visited the centre several times in the past.
We participated in clinics and a CME event, at which Radhika and Sara both spoke. We also had an opportunity to meet Kiran Majumdar-Shaw, CEO of Biocon, the largest biopharmaceutical compnay in India.
Some pictures from the visit below
Tanya and Helen with Sara and Radhika at the CHG entrance
Sara speaking at the Bengaluru CME
Tanya speaking at the Bengaluru CME
Tanya and Helen with Radhika and Sara
Families at the Bengaluru clinic
Sara and Radhika with Kiran Mazumdar-Shaw
Radhika with a patient at the Bengaluru clinic
Elin with some of the patients at the clinic
Dr Bhat (extreme right) with members of her team at CHG.
We then traveled to Chennai, where we were guests of Dr Sujatha Jagadeesh, clinical geneticist at Mediscan at the Republic Day MDT clinic that I have referred to earlier.
Elin has developed wearable technology which her company is testing out in Gaucher disease patients. Manjit Singh, President of LSDSS, had kindly arranged for some type I patients to attend on the day of the clinic so that Elin could demonstrate the wearable and patients could begin testing it.
Pictures below
Tanya speaking at the flag-hoisting ceremony at Mediscan. To her right is Manjit Singh, President of LSDSS
Dr Bina with a family in the Chennai MDT clinic
Patient being seen by an ENT specialist at the Chennai MDT clinic
Dr Jayarekha with a family at the Chennai MDT clinic
With Dr Jagadeesh at the Chennai MDT clinic
Dr Murugan, paediatric neurologist with a family at the Chennai MDT clinic
Group picture with families at the Chennai MDT clinic
Elin demonstrating the wearable technology to the type I Gaucher patients.
The group with Dr Jagadeesh and the Type I Gaucher patients
I have had a lifelong interest in lysosomal storage disorders. Having recently retired I now have time to pursue my passion for teaching and training of young doctors and scientists, and hopefully instil in them the passion for their patients that is so integral to working in this field.
View all posts by Ashok Vellodi