A rare disease is any disease that affects a small percentage of the population. Most rare diseases are genetic and are present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life. This community is to allow persons with rare disease to get access to lived experiences and other resources and to connect with each other
Prof. (Dr.) Shilpi Bhattacharya, diagnosed in the prime of her life with rare disease GNE Myopathy that weakens skeletal muscles, fought hopelessness and decided to take the illness by the horns to make a difference to herself and the rare disease community. In 2009 at age 27 you were diagnosed with GNE Myopathy. Please could you tell us a little bit about this rare disease. GNE myopathy is a rare disease that affects approximately 6 persons in a million. Symptoms generally start in the 20s or…
Dr PA Abhinand, 33, with spinal muscular atrophy, who has been on a wheelchair since a teenager, completed his PhD, works as a lecturer and is driven by a never-surrender mindset. Here, he talks about how sometimes life can be depressing and cruel to people with SMA, but still he ensures he lives every moment to the fullest. Could you give us a little background about your condition? I have spinal muscular atrophy (SMA) - a rare neuromuscular disorder which affects about one in ten thousand…
Nishat Fatima, 28 from Hyderabad, India was diagnosed with ITP, Immune thrombocytopenic purpura, a rare autoimmune disorder that can lead to excessive bruising and bleeding. She shares her journey through diagnosis and the challenges of living with this condition and how it changed her from being an active and jolly person. Initial symptoms In 2016, just a couple of days after my wedding, I was down with vomiting and dizziness. On one visit, my brother remarked that I looked yellow. The…
It took Rohan Dsouza, a fashion photographer, near 30 years to be diagnosed with narcolepsy, an incurable sleep disorder. Here he rues how he was adversely impacted personally and professionally because it is one of the most misunderstood and underrecognised health conditions. I was diagnosed with narcolepsy at age 30. I lived in distress, confusion and disgrace, not knowing what was wrong with me. Early symptoms As a child I used to fall asleep anywhere, anytime. I had difficulty getting…
Tushita Agrawal, a 16 year old from Akola, Maharashtra has been battling Behcet’s disease, a rare autoimmune condition, for 3 years now. She speaks of how she has tackled her challenges at such a tender age. Please tell us a bit about your condition? Behcet's disease (also called Behcet's Syndrome) is a rare autoimmune disease that affects blood vessels and can affect any system in the body. It has affected me neurologically as I have lost my sense of hearing. It has affected my digestive…
23 July is marked as World Sjogren's Day (WSD) to honour Dr. Henrik Sjogren who first identified Sjogren's syndrome as a systemic, autoimmune chronic rheumatic condition. Sjögren’s India and PatientsEngage bring together patient experiences of living with Sjogrens and what can be done to Conquer Sjogren's syndrome in India led by Mrs Kirtida Oza, co-founder Sjogren's India With special messages from Dr. Sapan C. Pandya, Secretary Indian Rheumatology Association and Dr. Debashish Danda…
Navigating Care and Survivorship Issues of Sarcoma, A Rare and Forgotten Cancer Sarcoma is a rare and complex type of cancer that is often misdiagnosed or diagnosed late. It also requires a multi-disciplinary approach. There are also long term issues that survivors face. We speak with a distinguished panel of sarcoma experts and survivors who are trying to address the various diagnostic and survivorship challenges of this forgotten cancer Our panelists are Dr. Sameer Rastogi, Medical Oncologist…
Jolene Dias, who was diagnosed with Limb Girdle Muscular Dystrophy, persevered her passion for music against adversities. From a celebrity singer, she began to teach music to children, including those with special needs, and challenge preconceived notions about people on wheelchairs. I was an extremely active child, good in sports and studies. I used to love to sing, dance, and perform. In school, I was at the center of all music shows, singing classes, and choir practices. I have been…
Dr Anupama Pattiyeri, who has a strong family history of hemophilia, was diagnosed with mild Hemophilia A at age 32. Today, she is actively involved with primary counselling as well as educational and financial empowerment among young hemophilics and women of the bleeding disorder community. Could you tell us a little bit about your condition? I have mild deficiency of Factor VIII (blood clotting protein). While the normal level of Factor VIII in blood is 50 -150%, mine is 26%. हिंदी में पढ़ें…
बेंगलुरु के 43 वर्षीय राजीव चंद्रभानु एक पीडब्ल्यूएच( (पर्सन विथ हीमोफीलिया, यानी कि (हीमोफिलिया वाले व्यक्ति) हैं - उन्हें 6 महीने की उम्र में ही हीमोफीलिया का निदान मिला था । इस इंटरव्यू में वे इस अवस्था के साथ अपनी व्यक्तिगत लड़ाई के बारे में बात करते हैं और बताते हैं कि इस के बावजूद वे अपने जीवन को कैसे ठीक से संभाल पा रहे हैं। कृपया हमें अपनी स्थिति के बारे में कुछ बताएं मुझे सिवीअर हीमोफीलिया ए (फैक्टर VIII डेफिशियेंसी) है। हीमोफीलिया एक दुर्लभ अनुवांशिक रक्तस्राव विकार है, जो रक्त में…
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