Patient Stories

A Journey of Resilience: My Battle with DADA2 and Recovery with Anti-TNF Therapy

In June 2018, I started developing small lesions under my skin. With time, these lesions increased, and I would develop a fever every evening. At that time, I just took PCM whenever I had a fever. Then after some time, I felt as if my ear was getting blocked, and whenever this would happen, I would develop nausea along with it, but after some time, it would get better on its own. The severity of these symptoms increased with time.

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From Suffering to Strength: My Journey with GPA and the Life-Saving Care at PGI

In 2021, after receiving my COVID-19 vaccine, I faced an unexpected and terrifying battle with a rare disease. What started with nosebleeds and difficulty breathing escalated into a series of painful surgeries and hospital stays, leaving me unable to hear, walk, or speak clearly. Despite numerous doctors being unable to diagnose my condition, it was finally at PGI Chandigarh where I received the care I desperately needed. Diagnosed with Granulomatosis with Polyangiitis (GPA), the doctors at PGI, including Dr. Aman Sharma and Dr. Akash, saved my life. Their relentless dedication, along with the support of my family, brought me back to health after years of pain and uncertainty. Today, I am healthy and grateful for the compassionate care that gave me a second chance at life.

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From COVID to Vasculitis: A Journey Through Misdiagnosis and Survival.

It all began with COVID in January 2022. Right after COVID, I experienced nasal bleeding and hearing loss. The ENT specialist prescribed antibiotics for a week, then another week, but there was no improvement. Soon, I started feeling pain on the left side of my head, extending to my jawline. Despite more antibiotics, my symptoms worsened, including nasal bleed, hearing loss, tinnitus (ringing sound in ear), and severe sinusitis (nose block). I also had a mild fever. Basic blood tests showed elevated TLC, so more antibiotics followed.

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Our Motivation

The Vasculitis Society of India was founded with a clear and compelling purpose: to make a meaningful difference in the lives of individuals affected by vasculitis across India. Our journey began with a shared commitment to raise awareness, provide support, and advance research on this rare autoimmune disease that often goes undiagnosed and misunderstood. We are driven by the courage and resilience of patients, caregivers, and healthcare professionals who face the challenges of vasculitis every day. Our motivation stems from a deep desire to create a supportive and empowered community where individuals with vasculitis can find hope, understanding, and resources to live full and productive lives. We believe that by coming together, sharing our stories, and advocating for better care and treatments, we can make a significant impact and foster a brighter future for everyone affected by vasculitis in India. Join us in our mission to raise awareness, provide support, and advocate for change. Together, we can make a difference and inspire hope for a better tomorrow for those living with vasculitis

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