Sjögren’s India (SI), founded and managed by patient volunteers in July 2006, is an informal body dedicated to enabling patients and their families to “Live Well with Sjögren’s Syndrome (SS).”

(Also open to RA, SLE (Lupus) and scleroderma patients). Sjögren’s India works for empowering patients through education, creating better public awareness and providing a forum for interaction with healthcare professionals. Support in terms of informal counseling, lifestyle management tips etc is extended to patients/families through personal/group, telephonic and virtual interaction. Sjögren’s India also develops educational resources in Indian languages and uses electronic and print media for enhancing awareness about this lesser known illness. For more information and access to free downloadable Patient Education resources (in Hindi, Gujarati, Marathi and English) please visit www.sjogrensindia.org. We welcome you to connect with us on Linkedin https://www.linkedin.com/in/sjogrensindia and on Facebook https://www.facebook.com/SjogrensIndia

Sjögren’s India has undertaken a study in order to understand the impact of SS on the daily life of patients. In order to correlate our perception of how SS affects patients, we request rheumatologists to help us by answering the following questions based on your interaction with your patients:

Q. 1.  Time taken for patients to get a confirmed diagnosis of SS (approximate % of patients)

1. less that 1 year
2. 2–5 years
3. 5–10 years
4. More than 10 years

Q. 2.  What is the most prevalent symptoms that you observe? (approximate % of patients)

1. Fatigue
2. Dryness of mouth
3. Dryness of eyes
4. Multiple organ involvement
5. Depression

Q. 3.  How do you think SS affects the overall quality of life of your patients? (approximate % of      patients)

1. Always tired/in pain
2. Feels ‘guilty’ for being ill
3. Personality changes, e.g. low self-esteem/loss of confidence/anger issues
4. Feels “alone/misunderstood”
5. Inability to continue working professionally
6. Inability to initiate, concentrate or complete tasks at home
7. Marital/Family life and social life are significantly affected

Q.4.  Why do you think patients are lost to follow-up? (approximate % of patients)

1. Inadequate understanding of the nature of illness
2. Side effects of medication
3. Inability to bear the financial burden of treatment
4. Inadequate family support
5. Turn to alternate therapy
6. Any other (Please elaborate)

Q.5. How do you think Sjögren’s India’s could help support your patients to ‘Live Well’ with their   illness?

1. Development of print/audio/audiovisual educational resources in India languages
2. Informal Counseling for patients and family members (personal/telephonic/electronic)
3. Conducting Patient Education programs with doctors in different cities
4. Enhancing Public awareness through mass media
5. All the above
6. Any other? Your suggestions are welcome!

Please help us:

1. Identify local patient leaders
2. Provide contact information about support groups/e-groups/individuals working for connective tissue diseases (RA, SLE, scleroderma)

Please send your responses by:
e-mail: sspatientgroup.india@gmail.com , kirtidaoza@gmail.com
Or post to Sjögren’s India, 701 Vatsaraj, Opp. Shraddha School, Jodhpur Gam Road, Ahmedabad 380015

Thank you!!