My name is Nikhil Jayswal, a person living with Inflammatory Bowel Disease (IBD) in India. I am a student of Aerospace Engineering at the Indian Institute of Science and I am also one of the Directors of IBD Patient Support Foundation (India) - the only registered non-profit in India serving persons living with IBD in India.
IBD – Inflammatory Bowel Disease, is a chronic condition of the gastrointestinal system with debilitating symptoms and expensive lifelong treatment. It is considered as a disability in many of the developed nations. However, in India, many experts think that more than 10 million or 1 crore people diagnosed with the condition suffer in silence, without any recognition of the challenges they face in their daily lives.
Listed below are some of the landmark works done by the Foundation in terms of creating support resources for persons with Inflammatory Bowel Disease in India.
- Created the first public repository of expert interviews, patient stories, panel discussions, etc. aimed at enabling patients to manage their disease better, raising awareness and creating reliable information that the patients can depend on.
- Hosted on Facebook Pages and YouTube
- Linked with online communities on Facebook, Instagram, and WhatsApp
- Collaborations with the topmost IBD experts in India, and renowned international patient advocates
- A combined online patient outreach of 1000+ patients across all mediums
- Worked together with AIIMS, New Delhi for onboarding of patients onto the IBD NutriCare App – a mobile application launched by ICMR and AIIMS for diet tracking and management of IBD patients.
- Worked with Colitis and Crohn’s Foundation (India) – an academic body of IBD experts in India, to train educated patients as Patient Counselors under the IBD-CARE program in 2021. This was the first time patients in India received formal training to support other patients in their IBD journey.
- Represented the IBD Community of India at the 2022 Asia-Pacific IBD Conference, conducted by the Colitis and Crohn’s Foundation (India) and the Asian Pacific Association of Gastroenterology
- 1st such instance of Indian patients being involved in an Asia-Pacific IBD Conference.
- Delivered a 30 min talk on “Mitigating the Silent Shrieks of the IBD Patient.”
- Collaboration with Enable India to provide free of cost counseling to IBD patients in India – a first of its kind resource for IBD patients in India to access free mental health care.
- Enabled the production of an academic thesis dedicated to studying the lives of women living with IBD in India – research work conducted by Tanisha Singh (MA Psychology).
- Peer support groups for patients on WhatsApp and Facebook – exclusive community for women to discuss women-specific issues in a safe space.
- Enabling healthcare access by connecting patients with IBD treating doctors and institutions.
- Mutual Aid and Fundraising for patients unable to afford medications/surgery.
- Mentoring young adults with IBD.
projects for greater impact on the grassroots level and supporting patients with difficult socio-economic backgrounds.
- A multilingual monthly IBD newsletter to be distributed via print in clinics, and available online on website and social media with the following –
- Patient education resources from experienced IBD physicians and professionals.
- Dietary and Mental Health Care resources, enabling self-care and self-management.
- Information about other support schemes available from national/international agencies.
- Patient Outreach for clinical trials and research/surveys, etc.
- A nationwide registry of IBD treating experts with clinic address, contact, and appointment details aimed at –
- Reducing travel for patients seeking IBD care.
- Reducing the burden on large IBD centers.
- Enabling emergency access to care.
- Annual IBD Patient Summit – a virtual conference, aimed at connecting patients, advocates and leaders to deliberate and co-create solutions to pressing needs of the community.
- Local manufacturing of support garments for patients with ostomies and free/subsidized distribution amongst patients – enabling patients with ostomies to overcome body image, mobility, and other ostomy pouch issues.
completely by the Directors – who are patients themselves.
The team behind the Foundation has fought many challenges and
navigated many barriers in creating this entity which has been a need of IBD patients in India since more than a decade.
The Foundation aims to be a leader not just for patients with IBD, but also for persons living with other chronic/rare illnesses in the
We have a vision of an India, where a diagnosis will not stop a person from pursuing their dreams and living their life.