What prompted you to start this group?

Diagnosed with aggressive lupus at 13, I believed I was the only Indian with the condition until I met others through my treating rheumatologist. Witnessing the severe struggles of a patient from an economically weaker background deeply pained me. This led to the founding of Lupus Trust India, an organization dedicated to Indian lupus patients. Despite my health challenges, I along with two other members registered the trust when I turned 18. We are a passionate team committed to improving the lives of lupus patients across India.

Could you elaborate on the roles and duties of the people in your team?

Our core team consists mainly of patients with lupus who are also patient leaders heading the following responsibilities:

• Patient educators
• Clinical Psychologist, legal consultant, Medical counselor
• Media & Communications
• Patient outreach managers
• Design Media, IT support 

This team structure allows us to utilize patients’ and non-patients strengths and insights in supporting and advocating for the lupus community.

How can lupus fighters get in touch with you, and how do you support them?

We provide emotional support, patient education, and networking with doctors across India. We offer limited financial aid and advocate for affordable medications and government insurance coverage. Recently, our advocacy led to the Kerala government covering lupus treatment costs up to 5 lakh rupees in all government hospitals. We also address social stigma, support inclusive workplaces, and promote transparency around lupus in social and family settings.

Reach us at: lupustrustindia@gmail.com, www.lupustrustindia.org, +91 8111849888.

How does your support group create awareness about lupus?

We bridge the gap between doctors and patients through educational campaigns, webinars, and social media outreach. We host events like the World Lupus Day celebration and support networks across 12 states. Collaborations with influencers help spread awareness, and we distribute educational materials in multiple languages to make information accessible to all.

What challenges do you face in caring for lupus patients?

Challenges include a need for more information in layman’s terms and regional languages and a shortage of skilled patient counselors. Limited funds often force us to decline financial aid requests. We stress evidence-based approaches to prevent patients from being misled by alternative medicine scams. Caregivers must learn positive reinforcement and openly discuss lupus without stigma.

What message would you like to share with fellow warriors?

For parents and caregivers, prioritize the holistic development of your child and allow breaks when needed. For young adults and families, understand that you haven’t done anything wrong and there is no need to hide. Transparency is crucial. Join us, connect with others like you, and find inspiration and support in our community. Every day you face lupus, you are a winner.