Babies born with Epidermolysis Bullosa (EB) are often referred to as “butterfly babies”, because they have skin as fragile – and tear as easily – as the wings of butterflies. Children with the condition may not receive hugs and embraces, as even loving touches may cause blisters and tears on their skin, wounds that may correspondingly lead to decreased mobility, disfigurement, and disability. As of 2018, there exists no standard treatment nor cure for the disease.

The lack of awareness of and support for patients of this rare genetic disorder was what prompted Dr Ritu Jain, Valedictorian of the FASS Class of 2017 and FASS Student Leadership Award (FSLA) Winner, to start DEBRA Singapore, a patient-led support group for children and families suffering from EB.

The FSLA acknowledges Dr Jain’s dedication to the cause: as the President of DEBRA Singapore, she has worked with pharmaceutical companies to bring clinical trials to Singapore, negotiated price cuts for essential dressings, participate in conferences, and organised talks, workshops, and activities in partnership with KK Hospital, National Skin Centre, and the National University Hospital. Please enjoy our interview with her below!

Could you tell us about your work on DEBRA Singapore and your motivations for initiating it?
DEBRA Singapore, a patient support and advocacy group that supports wound-care and other needs of patients and families with the rare genetic disorder, Epidermolysis Bullosa. I started it for two main reasons: 1) a family member suffering this condition and more importantly, 2) awareness of the need for a patient support group in the absence of support from the government, insurance policies, and/or any other agency.

What was the impact of your project?
Currently, we support all EB related needs of all EB patients as well as of a few in the Asian region (e.g., in Cambodia, India, Pakistan, etc.).

What challenges did you face while working on it and what motivated you to keep going?
The lack of awareness among people, the cultural stigma of having a ‘disease’, and the lack of funds for the exorbitant products that patients need every single day. The suffering of patients and the struggle of families in meeting the daily needs of the children was a motivation that kept me going. Of course, the support of the Debra team and of Debra International, the doctors at KKH and NUH and the researchers at the IMB Lab at A*Star made an immense difference.

Are there any recent developments or updates to your project? Are there any other projects you have worked/are working on?

Debra Singapore now participates in a global Butterfly Run that has enabled us to create awareness locally and internationally. We were also featured in a Channel News Asia documentary called the Butterfly Children (https://www.channelnewsasia.com/news/video-on-demand/butterfly-children/butterfly-children-9937670) and this has helped bring awareness of the condition to a large extent.

I was also able to co-organise the first EB conference in India in January 2018 and am organizing another in Singapore, in conjunction with the Regional Scientific Meeting of Pediatric Dermatology on April 27th, 2018. As part of our commitment to facilitating better delivery of healthcare for EB patients, I am working with doctors in Indonesia to enable the visit of a multi-disciplinary team of doctors and healthcare workers to Bandung, Indonesia in the first week of May. I am also working with EB patients and families in Pakistan through sharing information and creating a network of healthcare professionals to facilitate access to better EB care.

What are your fondest memories of NUS?

I’ll always cherish the various faculty events such as the FASSforward, graduate representative get-togethers, and the various seminars. However, some of my fondest memories are of hanging out at the Deck, drinking endless cups of coffee, sharing ideas and arguments with faculty members and other graduate students, and moaning about the agony of graduate experiences with co-suffering peers!

What have you been up to since you got your PhD?

Other than teaching full time, managing my family, running Debra Singapore, working on the board of Debra International and Rare Diseases International? Oh, just drinking endless cups of coffee and having endless conversations with the wonderful students at NTU and ex-students and colleagues at NUS ♥