Auto Immune conditions

Thanusree, 27 years old from Chennai has lived with a Juvenile Lupus diagnosis since 2010. She shares her experience of the challenges of getting a diagnosis and managing the emotional ups and downs of SLE. Symptoms and Diagnosis In 2010, during my 10th grade when I was 14, I had a blood clot and was advised a blood test which we took lightly and did after 2 weeks. However the day after the blood test, the lab called me and told my parents that I need to be admitted immediately in the ICU as…

Priya, an HR professional, based in Thiruvanathapuram, Kerala and mother to Divya (names changed to maintain anonymity), 9 year old with a diagnosis of Juvenile Lupus shares their experience of the complexities of this condition in a young child and how she tries to let her daughter maintain a "normal" routine.  Symptoms and Diagnosis: My daughter Divya was born in 2014. She was first diagnosed with Lupus SLE on June 15 2019 (her grandmother’s birthday) when she was 5 years old. Divya was…

Shreya Shukla, 26 years, runs her own Digital Marketing Agency, based in Kanpur, UP and lives with a diagnosis of Juvenile Lupus. She shares her experience of the complexities of Lupus at such a young age, from delayed and wrong diagnosis to managing the condition and her journey to independence. Symptoms and Diagnosis In November 2008, when I was 12, I had body ache, joint pain and mild fever and when I consulted my doctor, I was treated first for Chikungunya. Prior to this in 2007, I had had…

Dr Sujeet Rajan, a highly reputed Pulmonologist spoke on ILD (Interstitial Lung Disease) and its management in Scleroderma at the Sclerocon e-conference held in June 2023. In simple terms, Dr Rajan explains what happens during ILD and Pulmonary Hypertension and benefits of preventive along with rehabilitative therapy in Scleroderma Lung disease. Systemic sclerosis or Scleroderma can affect the lung in several ways. What we need to worry about in Scleroderma is pulmonary hypertension,…

Dr Prasan Deep Rath, is the Senior Director & Head – Rheumatology at Max Super Speciality Hospital in Saket, New Delhi. He talks about how the heart is a major organ involved in Scleroderma at the Sclerocon e-conference held in June 2023. He details the layers of the heart for better understanding, the connect with lungs and how to recognise the differences between right and left heart failure. In addition, he explains how Scleroderma can affect the heart and how we can detect it on time.…

Dr Kaushik S Bhojani, a Consultant Rheumatologist talked about the much acclaimed Stem Cell transplant treatment for Scleroderma patients at the Sclerocon e-conference held in June 2023 by Scleroderma India. Dr Bhojani clears the air on who is eligible, what to expect along with the pros and cons of opting for the transplant. Origin of stem cells transplant as treatment option for Scleroderma We know that the treatment of Scleroderma or systemic sclerosis, is less than satisfactory at this…

Dr Aarya Sree, Consultant dermatologist talked about skin conditions affecting patients with Scleroderma and how they could manage them.  She explains in detail how Scleroderma affects the skin. With various products and cosmetic procedures available in the market, Dr Sree clarifies what can or cannot be used or undertaken and why. This session was part of the Sclerocon e-conference held in June 2023. Scleroderma is a multi-organ disease where sclero means hard and derma means skin.…

Hrishita Gupta, 23 years old is a teacher in Siliguri and has lived with a Juvenile Lupus diagnosis since 2014. She shares her experience of managing this complicated condition and how she copes with Systemic Lupus Erythematosus (SLE). Diagnosis I had fever for very long time and in 2014, at the age of 14, I was advised a Tuberculosis test which was mild positive and I was treated for TB for 3 months. In 2013 I had developed joint pain which may have been due to Arthritis, but that was never…

A. Alphonse Prabhu Roy, 60, was diagnosed at a young age with two chronic autoimmune disorders, Lupus and Sjogren’s Syndrome, with multiple complex symptoms, the most challenging being dry mouth and brain fog. Narrating his experience, he said both illnesses need to be handled carefully or else they can severely impact work and home. You have been the general manager of a public sector oil company for many years. Please could you tell us a bit about your current work and where do you live?…

Anita Mody, an active grandmother and housewife wakes up one day with suspicious pain in her legs. A week later, she is unable to walk, move or feel her legs. A rare and progressive nerve disorder called Guillian-Barre Syndrome changes her life with no warning. She struggles with it but hopes to come out of it soon. Here is her account of it with the help of Bhakti, her daughter in law. Please tell us a bit about your condition. I have Guillian-Barre Syndrome. I had never heard of it before. It…