From Patient to a Patient Leader: Learnings As a Patient

Kirtida Oza

Co-Founder & Director

Sjogren’s India

My tryst with autoimmune diseases began over 30+ years ago. I was diagnosed with autoimmune thyroiditis after the birth of my first child. For many years thereafter, I made multiple trips to different specialists for treating seemingly unrelated problems with my teeth, eyes, skin rashes and unexplained fatigue, I had repeated Upper Respiratory Tract infections, sudden joint pains and swellings and was frequently sick. In 2002, I finally got diagnosed assuffering from a complex, autoimmune rheumatic condition - Sjogren's syndrome (now renamed as Sjogren's Disease - SjD).

Twenty years later, I was diagnosed with yet another autoimmune condition- Polymyositis, which causesinflammation of muscles. I was unable to get up without support, had balance issues and could not do stairs. Additional medication and exercises to strengthen muscles have helped me regain my confidence and mobility.

As a Patient Leader/Advocate

In 2006, I co-founded Sjogren’s India (SI) with the vision to empower Patients and families to ‘Live Well with Sjogren’s Disease’. SI is the only patient-led support group with special focus on SjD in India. My own struggles while navigating this complex disease enabled me to realize that education and counselling support in the context and language patients understood, was much needed for this lesser-known illness, especially in India. The story of how a patient initiated the Sjogren’s Foundation in USA, inspired me to start a support group for empowering patients and families in India.

How does a support group help you?

As a patient, I looked for help/information, support - but got none.Therefore, I decided to help other patients feel less alone in their journeys.

I believe that a support group:

• Provides a safe and supportive space for patient-to-patient interaction.
• Sharing and caring within the community reduce the sense of isolation and empowers patients.
• Family members being a part of the community helps in creating a supportive environment for the patient at home.
• Provides a platform for experts and patients to interact.
• Belonging to a community, motivates you to stay on your path to recovery.
• Amplifies the patients’ voice and bring attention to individual struggles.
• Advocates for Patient’s Perspective to be valued.

Mission Arthritis India (MAI) is the pioneering support group for Arthritis in India. MAI and SI have been interacting for several years. We collaborated on developing a booklet in English and Marathi on Dry Eyes and Dry Mouth in 2016.I was awarded a plaque of recognition for my work for patient empowerment. Receiving this honour from peers was indeed special.

SI, MAI and several other rheumatic diseases support groups are working towards building a Patients Alliance for Rheumatic Diseases (PARD) in India to work together on common challenges and advocacy for Rheumatic Diseases.

My learning as apatient and patient leader

• Accept your illness and the challenges it poses
• Take positive action by joining a support group
• Prioritize your health and become actively involved in your wellness journey
• Learn more about the illness
• Learn to listen to your body
• Follow your treatment plan diligently, follow up regularly and report any problems
• Do not stop or change your medication without consulting your doctor
• Adopt the necessary lifestyle changes like including daily exercise, eating a balanced diet and reducing stress.
• Sleep well and stay happy!

You have only one life…ENJOY!