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
Mrs Hsu*, age 47 has been a caregiver for 12 years to her husband Mr. Hsu, diagnosed with rare neuroendocrine cancer. Read how they both took control of his cancer journey and became a firm believer that with good knowledge and support, we can help a patient survive more than 4-6 months. I am caregiver to my husband Henry*. Some 12 years ago, he was diagnosed with a rare cancer, a pancreatic gastrinoma neuroendocrine tumour (NET). He was 50 at that time. His symptoms started with severe…
Suzanne Sangi, 26, was diagnosed with a rare neurological condition called Idiopathic Intracranial Hypertension causing severe headaches, ringing in her ears with a daunting possibility of going blind. Here she talks about her treatment and renewed will to live thoughtfully and hopefully. I often wondered to myself, things couldn’t get any worse than they were -- I’d been living with a chronic illness called Lupus for more than three years now. My kidneys had been aggressively damaged and I’ve…
Devika Phukan, currently a professor in Guwahati, not only battled Sjogren’s but also the trauma caused due to lack of understanding of her condition by medical practitioners (in far flung areas) and the social taboos and ostracization by loved ones. This article has been contributed by Sjogren’s India to highlight the need for early diagnosis and awareness among the medical community. “More than the physical harm from the disease, it was the emotional damage that was debilitating … the…
The theme for World Hemophilia Day this year is “Access for All: Partnership. Policy. Progress. Engaging your government, integrating inherited bleeding disorders into national policy”. By raising awareness and bringing hemophilia and other inherited bleeding disorders to the attention of policymakers, we can increase sustainable and equitable access to care and treatment. We speak with 4 leading voices committed to advocacy and education for hemophilia at the national level and dedicated to…
डॉ अनुपमा पट्टियारी के परिवार में बहुत लोगों को हीमोफीलिया है। हालांकि कई लोगों का सोचना है कि हीमोफीलिया सिर्फ पुरुषों में होता है, डॉ अनुपमा को भी 32 साल की उम्र में हल्के हीमोफीलिया का निदान मिला था। आज, वे हीमोफीलिया वाले युवा और हीमोफीलिया(ब्लीडिंग डिसऑर्डर, रक्तस्राव विकार) वाली महिलाओं के समुदाय को प्राथमिक काउन्सलिंग देने में, शिक्षा देने में और उनके वित्तीय सशक्तिकरण में सक्रिय रूप से भाग लेती हैं। क्या आप हमें अपनी स्थिति के बारे में कुछ बता सकती हैं? मुझ में फैक्टर VIII (एक ऐसा…
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…
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