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Submitted by Sjogren's India on 9 March 2018
Kirtida talking at a Sjogrens Patient Support Group Meeting

Talking and writing about health related experiences is still not common in Asia.  This International Women’s Day, we reach out to three dynamic women who share their experience as patient or caregiver to understand their motivations. In the second part we talk to Kirtida Oza, Co-founder Director of Sjogren's India.

Kirtida, tell us about the journey to a diagnosis of Sjögren’s Syndrome

In 1989 I became a Mother! My little son was the source of great happiness for our family and I enjoyed bringing up the baby. As a new mother, I thought I was getting exhausted due to the usual rounds of sleepless nights and breast feeding the baby. Strangely, I also developed photosensitivity and it took me a couple of months to be able to watch television again. The Ophthalmologist opined that my eye muscles were strained during childbirth and that I needed correction glasses. He could not really explain the photosensitivity. One day when my son was about four months old, I was shocked when I was too tired to even hold my baby, It so happened that I was totally alone that weekend and was in no position to manage the baby and myself. A kind aunt took me to her place and helped me during this crisis while I got some blood work done to determine the cause of this extreme fatigue. My TSH level were very high and I needed an Endocrinology consultation. The verdict was - Hypothyroidism, which I eventually learnt to manage with a daily dose of synthetic Thyroxine. On hindsight this could have been the beginning of an auto immune malfunction in my system.

Eight years later, my daughter was born. Although I had a fairly smooth pregnancy and delivery, I started falling ill very often in the ensuing years. I would come down with sudden fevers, upper respiratory tract infection, skin rashes on my legs, repeated attacks of tendonitis, vague aches and pains and extreme levels of dry mouth and fatigue. These symptoms were debilitating for a busy working mother of two. I started needing regular dental treatment and had to visit ophthalmologists for blurry, burning eyes.

Various doctors were unable to put the symptoms together and I started feeling that I was being treated like a 'bag of organs' rather than a whole person! I was most annoyed when I got told that I was 'imagining' my illness and was given antidepressants.

While my story resonates with a lot of patients who finally get diagnosed with Sjogren's (pronounced (SHOW-grins) syndrome, the slight exception is that I decided to fight the doctors' 'verdict' and prove that I was indeed 'sick'!

My sister who frequented the Health Education Library for People (HELP) found an article on 'Dry Mouth' which mentioned the manifestations of Sjogren's syndrome (SS). We discovered that this illness required a Rheumatology Consultation and my next task was to find one! Since there were none practising in my city (in 2002) I had to travel to Mumbai where I finally got a confirmed diagnosis for SS after a salivary gland scintigraphy, blood work and a clinical examination at a reputed hospital.

The twist in my tale was after a discussion with my doctor, I decided to defer the treatment for one year, till I got back from my professional assignment for which I would be in USA for a year.

Watch the video conversation with Kirtida Oza below.

Why did you choose to talk and share about your condition - Sjögren’s Syndrome

When I was finally told that I had 'Sjögren’s syndrome', my reaction was relief, vindication and even a sense of 'empowerment'. Knowing what I was up against made me more confident of 'dealing' with the problem. My reaction to any problem is to think of "ACTION" and now I had to figure out a way of 'Living Well' with this lesser known, highly under-diagnosed condition. I needed to first understand what the illness was. I educated myself by reading about the condition and asking specific questions to various doctors. However, I did not know a single other person who was suffering from this condition. Nobody in my immediate circle of contacts has even heard of the 'unpronounceable' illness! I felt 'ALONE'. Since the illness has less outwardly apparent manifestations, it was difficult to convince people just how 'tired' I felt, or why I was unable to be as socially active as I used to be. Not only was awareness about this 'invisible', 'unpredictable' condition almost absent in the general community, I found it was under understood even by the primary physicians. This was perhaps the biggest reason for this epidemiologically second most prevalent Rheumatic condition to be 'Rare' in terms of diagnosed conditions.

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Another thing that hugely bothered me was the fact that patients had to not only fight their physical battles but also the socio-cultural challenges that their illness posed. 90 percent of SS patients are women. In a patriarchal society like India, socio-cultural expectations in accordance with gender roles and responsibilities get added on. It annoyed me to realize that my illness was not taken seriously and suspected that people even thought I was either 'faking' or 'fussing' over a trivial matter. Perhaps I was just 'lazy or inefficient?'

I soon realized that if I felt like this... there must be many more women out there who were worse off. Those who did not read English, nor have access to the internet. Those who had unsupportive families who did not want to spend valuable resources on a 'incurable' illness and that too for a woman. I felt I needed to work towards supporting other patients in some way.

In 2003, I returned to India and found a trained Rheumatologist who had just started practice in my city. This was the beginning of a long relationship not only as Doctor-Patient, but as a guide and mentor who helped me understand the many layers of this illness. We have worked together as a team on my own treatment plan facing the ups and downs that come with a chronic condition. He whole heartedly supported my idea of starting a patient support group and even helped me to connect with another patient who was willing to join me in taking this idea ahead.

While in the USA, I heard about the Sjögren’s Syndrome Foundation (SSF) which has been doing patient education and support for around three decades. I established contact with them and sought guidance and support to start an initiative in India. Sjögren’s India, was launched in July 2006 with a mandate of supporting patients though education and informal counseling.

In order to encourage other women to stop feeling 'GUILTY' about being ill or ashamed at their inability to perform their 'roles' to perfection, I started talking about my struggles at every opportunity I got. I spoke at Patient education events, Medical conferences, print and broadcast media including radio and television. I created a website which allowed people to connect with us, and used social media platforms like facebook, Linkedin and YouTube videos. I administer a WhatsApp group for patients and family members and occasionally contribute to the Indian Rheumatology Association's Newsletter and other patient platforms across the world.

Did you focus on any particular aspect of the condition?

As a Patient Educator I focus on imparting basic information about the condition preferably in the local language. I felt that ‘understanding’ the various manifestations of SS were crucial to better management. Considering that every patient has different symptoms and no two patients are alike in either the manifestations or response to treatment, explaining this to patients and more importantly the family is very important.

As an informal counselor, I also focus on talking to patients and helping them feel less alone in this battle. I talk to their families about how they need to support the patient with making the right treatment choices, appropriate lifestyle changes and regular monitoring and follow up. I do not proffer medical advice which is best left to a qualified professional, however I do help people with thinking through their confusions and suggest what kind of specialist they might need to consult or help them ask the right questions.

For general awareness, I write and share information about the illness, latest news, newest research, information about medication and opportunities for patients such as educational programmes and other events.

I network with Patient Support Groups through the International Sjogren’s Network (ISN) to share information and learn what is happening in other countries. We work on collaborative ideas some times.

Through the Linkedin platform I am connected with Rheumatologists all over the world and I focus on sharing scientific news, latest research and information of interest to Rheumatologists.

Did you benefit from sharing?

Sjögren’s India is not only for supporting other patients ‘Live Well”; but has been my ‘saviour’. Working on helping others helped me overcome my own sense of loss at having to give up my ambitions as a professional. As an Educator and Trainer, I reoriented my skills to focus on education patients and their families on dealing with their illness, It gave me a purpose in life and made me feel less ‘worthless’ as an individual. Today I am proud about the way I have been able to redirect my dwindling energies to a cause that improves the lives of some people. Although there is no monetary benefit, I feel a sense of achievement. I have been recognized for my small efforts by other patient organizations, by the medical community. I am a Fellow of the Aspire Circle for enlightened Social Leadership.

Could you share examples of others who benefited from hearing you talk about it 

Most patients need support when they are newly diagnosed. Some need support on and off during the course of their illness especially when experiencing a flare-up. Almost every patient who has called on the Helpline or has had a personal interaction has benefitted in the sense of feeling better informed and more confident of dealing with their challenges. I am often told that they just want to ‘speak’ to me even if they have no particular question… just be reassured that there is someone else who ‘understands’ what they are going through.

The biggest example of how talking to patients has benefitted them comes from my friend, Co-founder of Sjögren’s India. She was a nervous wreck when I first met her, not confident about talking about her illness in a family where illness was considered a sign of ’weakness’. Faced with multiple issues including bipolar disorder which left her badly depressed, social challenges and responsibilities of geriatric care for family members, she was often at wits end. I am happy to have played a small role in helping her to overcome her many challenges. Today she a much happier, second time mother to a toddler who was born 18 years after her older child! She has learnt to live with her limitations and face her challenges chin up!

Any negative comments, criticisms you faced for talking about your condition

In the initial years, the concept of a Patient Support group was still in its nascent stage. Doctors were skeptical and patients hesitant.

I often faced situations when patients and their families would not be willing to ‘admit’ that they were ill, although I had got the references from the Doctor. An incurable condition was almost like a stigma and so a lot of times when I called up to talk to the patient, a member of the family would ask me to stop calling because there was no ‘sick’ person in the family. People feared that coming to Patient Meets would make them feel more ‘depressed’. Some people were curious to know what I gained from the interaction. They were suspicious there was an ulterior motive to this engagement especially since I would insist on their bearing the cost of their own transport and food for attending the event. It took us persistent efforts to get 20 people to attend!

Doctors were unwilling to talk to a non-medico and were highly suspicious of our interventions. In the name of patient confidentiality, they would refuse to share patient contacts and there was no other way of accessing patients. However a few years later a lot has changed for the better. The website and the social media presence enabled to broaden our outreach. People now seek out help. Our email interaction and telephonic helpline are very often accessed from patients and families not only in India but across the world. We have been accepted by the Medical community too and get direct referrals from doctors now.

Read about the other women who shared:

Sangeeta Murthi Sahgal: It was Cathartic and Fun to Relive Old Memories

Mariyam Raza Haider: It Brought Perspective to My Father's Illness and its Impact on My Life 

Click here to know more about online webinar on Rheumatic Diseases moderated by Kirtida Oza

For more information on Sjögren’s syndrome (SS), visit www.sjogrensindia.org Contact Sjögren’s India on e-mail at sspatientgroup.india@gmail.com