They lived for years being told that their illness was "imagined". Finally, they were diagnosed with a rare disorder called Sjögren’s Syndrome. Now they are helping others understand their symptoms, get diagnosed early and "live well" with this with SS through their support group Sjögren’s India.
Purvi and Kirtida lived for years being told their illness was “imagined”. Finally they were diagnosed with Sjögren’s Syndrome. Now they are helping others “live well” with this rare disorder.
Kirtida Oza and Purvi Doshi felt extremely frustrated. The doctors told them that they were “imagining” their illness. They looked well, but felt terrible. As individuals, both Kirtida and Purvi struggled for years through dryness of mouth and eyes, debilitating fatigue, respiratory infections, joint pains, skin rashes and dental problems. They were finally diagnosed with Sjögren’s (pronounced as “SHOWgrin’s”) syndrome. That’s when Kirtida and Purvi launched the support group called Sjögren’s India – perhaps the only one of its kind in the country.
Sjögren’s syndrome. – What’s that!?!
Sjögren’s syndrome is a serious, under-recognized auto-immune condition afflicting humans. The famous tennis player, Venus Williams who opted out of the US Open after suffering from a mysterious illness in fact was diagnosed with Sjögren’s Syndrome!!
Sjögren’s Syndrome (SS) is estimated to affect 4 million Americans and perhaps three times more Indians. Statistics show that nine out of ten patients are women. Considering the Indian social milieu, women face socio-cultural challenges in addition to the physical and emotional challenges posed by the illness.
Kirtida Oza and Purvi Doshi, both SS patients, realized from their own life experiences that it was very important to seek the right medical interventions, the right treatment, raise one’s awareness about SS and the fact that it is treatable, seek understanding and support from the immediate family and remodel one’s lifestyle to live well with the illness. There was no platform or forum or a “go to” kind of a group for SS. With just 50-60 doctors to deal with SS in India, patient support and education became crucial.
This is when Sjögren’s India was launched. It was formed in July 2006, with a vision to support and educate SS patients throughout out India and help them towards LIVING WELL with Sjögren’s Syndrome.
Kirtida herself is an educator, trainer and a documentalist. The experiences and insights gained while developing awareness building strategies got utilized in extending the mandate envisaged for Sjögren’s India. The supporting actors have been the husbands and the family of Kirtida and Purvi in forming and taking forward Sjögren India’s agenda.
The Thought Behind It
Sjögren’s India is a unique support group because it was patient initiated and is managed by SS patients themselves. The belief is that to achieve better health there is a need for a multi-pronged approach where the doctor, the patient and the patient’s family need to work together. The Gujarat Rheumatology Association supports the work of Sjögren’s India.
The primary focus is to help SS patients and families improve the quality of their lives as they are counseled to accept and understand their illness. Sjögren’s India conducts patient meets to educate patients and family members about available treatment options. Such meets also helps facilitate patients to connect with appropriate medical professionals. In 2006, only 20 members registered and participated. But over the years, now more than 100 patients attend and seek support.
Sjögren’s India also counsels patients through emails and over the telephone to adopt necessary lifestyle changes and to develop a positive attitude towards living well with Sjögren’s syndrome.
The journey thus far
The journey began in 2006. Since then, 17 educational and self-empowerment sessions have been organized for the SS patients across Gujarat. These interactions focus on understanding Sjögren syndrome and other connective tissue diseases. Interactions have been facilitated with multi-specialty doctors such as Rheumatologists, Ophthalmologists, Dentists, a Psychiatrist, Counselors and a Nephrologist.
Raising awareness is the prime focus. Succinct information is available through the educational resources such as brochures, posters, newsletters and Patient Education Sheets on Lifestyle management in three Indian languages (Hindi, Gujarati and Marathi) besides English. Their website (www.sjogrensindia.org) is another initiative for a wider reach.
So far, more than 500 patients and their family members have been counseled over telephone and email from all parts of India and even from abroad. At each of these events and for the activities there are volunteers who have provided professional support.
Challenges abound for Kirtida and Purvi. Educating doctors at the primarily level is a huge challenge. But efforts are on. The spirit of giving never dies. As more awareness is raised, more patients would seek out help from Sjögren India. And they aim to be there for them.