Auto Immune conditions

Amita*, a 20 year old working woman from Mumbai, with a diagnosis of Juvenile Lupus shares her experience of dealing with this condition, the emotional and financial toll it took on her and how she has come to realise the importance of medication adherence.  Symptoms, Diagnosis and Treatment It was around 2018 when I was pursuing my SSC and one day when I came home my mom saw a bald patch in my hair. Like a bunch of hair somebody had cut it off. So we panicked and after visiting a…

Neetu Wadhwa, co-founder Scleroderma India, a patient advocate committed to improving lives of those affected by Scleroderma. As we relive the memories of our interactions with Neetu, let us resolve to continue to champion for the rights and wellbeing of patients and their families. Rashmi Bhasin, Trustee and Core Committee Member, Scleroderma India  Today marks one year to the untimely passing of our dear NEETU.  She was a Warrior in true sense.  I always remember her smiling…

Debalina, a 25 year old student based in Kolkata, with a delayed diagnosis of Juvenile Lupus, no referral to a Rheumatologist and potentially inadequate treatment plan for 10 long years. She shares her experience of the complexities of this condition and the need for Lupus awareness for timely and appropriate treatment. Diagnosis & Treatment I had no specific symptoms till I was 13. Till about 2008, I experienced headache from time to time when exposed to sunlight. Doctors thought I had a…

Aqsa, a 17 year old from Mumbai, shares her journey of navigating Juvenile Lupus as a young teenager, including understanding the disease and seeking the right treatment. Key learnings are accepting the side effects of medications and the importance of family and social support. Symptoms, Diagnosis and Treatment I was first diagnosed when I was 12-13 years old and in 7th grade. I had swelling on my feet, but was too young to understand the disease. I went to Judo classes and had joint pain,…

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…