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Ahmedabad Gets Vasculitis Patient Support Group Relief

Vasculitis Patient Support Group Promotes Early Action and Awareness

Marking Rheumatology Awareness Month, the Vasculitis Society of India and the Rheumatology Association of Gujarat (RAG) launched the ‘Vasculitis Patient Support Group’ in Ahmedabad on Saturday. The event included an awareness programme on vasculitides, a group of rare autoimmune disorders that cause blood vessel inflammation.

The new support group aims to provide education, guidance, and reliable information to enhance the quality of life for those affected. Such groups have shown a strong impact in countries like the UK and the US, where patient networks help people manage long-term illness better, reduce stress, and follow treatment plans more closely. Originally established in Punjab, the Vasculitis Society is expanding nationwide through patient engagement and outreach to build supportive communities. Experts say patient-led communities often improve early diagnosis because people learn to recognise warning signs sooner.

The Main Functions of Such Patient Support Groups Are:

To become a bridge between the patients and the doctors,
To make aware to the public at large about the vasculitis.
Collect the data of patients and secure them.
Find the gaps in the disease (Vasculitis)
Bargain to Pharmacy and Cath labs
Contribute to the scientific data collections, such as how many patients have lung problems, kidney problems, etc.

In a message on the occasion, Chief Minister Bhupendra Patel congratulated the Indian Rheumatology Association (IRA), the Rheumatology Association of Gujarat (RAG) and the Vasculitis Society of India for the initiative. He commended the IRA and RAG for organising Rheumatology Awareness Month in April. Public awareness campaigns like this are widely used across the world to bring attention to lesser-known diseases, especially those that are often missed in early stages.

“I am especially happy that initiatives like Vasculitis Support Group and Antardhwani have been launched to reach out to patients,’’ said the CM in the message. Programmes like these often give patients a safe space to share their experiences, which many doctors believe is key in dealing with chronic illness.

Vasculitis specifically inflames blood vessels, distinguishing it from conditions like rheumatoid arthritis, which primarily affects the joints. These rare, complex disorders have a global prevalence of 0.02%–0.04%. Though rare, global health data shows that cases are rising slightly due to better detection and awareness. In simple terms, when blood vessels swell, blood flow can slow down or stop, which can harm vital organs.

Diagnosing vasculitis is challenging for healthcare practitioners due to its wide clinical spectrum. It can affect organs like the skin, kidneys, lungs, or brain. Vasculitides often mimic common diseases such as tuberculosis, infections, or even cancer. This confusion is a major issue in countries like India, where TB is common. Studies in medical journals show that many patients visit multiple doctors before getting the right diagnosis. Diagnosis is frequently delayed by months. There is limited access to advanced tests like ANCA, complement levels, or tissue biopsies, especially outside major cities.

The condition imposes significant medical, social, and economic burdens. Patients may face organ damage such as kidney failure, stroke, or lung bleeding. Many cases follow a pattern where the disease improves and then returns, making long-term care difficult. Research shows that patients often struggle with fatigue, pain, and reduced ability to work. The cost of treatment is another major concern. Medicines like immunosuppressants and biologics, including Rituximab, are expensive and may require repeated hospital visits. Families often bear heavy financial stress.

“While each type of vasculitis is rare, collectively they affect many patients and remain underdiagnosed in India, leading to preventable complications and disability,” said Dr Aman Sharma, President of the Indian Rheumatology Association (IRA) and Professor at PGI Chandigarh. International reports support this view, noting that the lack of awareness among both patients and general doctors delays treatment.

He emphasised the national scope: “Vasculitis causes inflammation of blood vessels, posing complex diagnostic challenges. Our mission is to boost awareness across India, improve access to specialised care, and ensure better disease management and health outcomes for every patient.” Many countries have started special clinics for autoimmune diseases, which have improved survival rates and quality of life.

Dr Sapan Pandya, IRA vice-president and associate professor of rheumatology at SVP Hospital and Smt. NHL MMC highlighted the local impact: “Launching the Vasculitis Patient Support Group in Ahmedabad builds a community where patients and caregivers access reliable information and guidance. Through education and outreach, we empower them for healthier lifestyles and improved quality of life.” Lifestyle support, including diet advice and mental health care, is now seen as an important part of treatment.

Dr Reena Sharma, consultant rheumatologist, said: “As RAG President, I’m excited to launch the Vasculitis Patient Support Group to boost rheumatology care. This autoimmune disease inflames blood vessels, like other rheumatologic conditions, showing in rashes, fatigue, or organ issues. Early ANCA-tested diagnosis and Rituximab treatment are vital; awareness empowers better lives.” Medical experts also stress that early treatment can prevent serious organ damage in many cases.

The launch also featured Dr Vishnu Sharma, Dr Anuj Shukla, and Dr Dhaiwat Shukla. Earlier Saturday, SVP Hospital faculty conducted bedside clinical grand rounds with students, teaching rheumatology’s clinical and analytical skills. Training young doctors is important, as India still has a limited number of rheumatology specialists compared to its population.

Rheumatology Awareness Month continues with a CME for postgraduates in medicine from Gujarat and nearby regions on April 19 at Smt. NHL Medical College, Ahmedabad. Regular training sessions like these help doctors stay updated with new treatments and diagnostic methods. The Department of Rheumatology and Clinical Immunology at SVP Hospital plans to organise such CMEs every year and has also started a DM course in the field this year, which will help build future specialists.

The Rheumatology Awareness Walkathon 2026 will take place on April 26 at the Riverfront, Ahmedabad, from 7 am to 9 am. Events like walkathons are widely used across the world to spread awareness and encourage healthy living. The message ‘Move Free. Live Pain-Free’ focuses on early diagnosis, regular movement, and community support, all of which are known to improve outcomes for people living with autoimmune conditions.