In this section, you can find out about the experience of having systemic vasculitis by seeing and hearing people share their personal stories.
From June 2020 to June 2021, our researcher Avril interviewed 32 people from the four countries of the UK about their experiences of systemic vasculitis and healthcare. People were aged between 22 and 81 at the time of interview. Their age when they were diagnosed with systemic vasculitis varied from 18 to 74. Some had symptoms many years before they were diagnosed while, for others, symptoms had come on more suddenly. We spoke to people with different types of systemic vasculitis - including ANCA associated vasculitis (AAV), giant cell arteritis (GCA), Takayasu arteritis and Behçet’s syndrome. Due to the COVID-19 pandemic, all interviews were done online.
What we do and don't cover
Vasculitis is a group of rare inflammatory diseases that cause inflammation of the blood vessels. Any blood vessel in any part of the body can be affected. There are different types of vasculitis. Although we use the word ‘vasculitis’ throughout, this website is about primary systemic vasculitis. ‘Primary’ means the vasculitis isn’t a result of another illness, and ‘systemic’ means it can involve any part of the body.
There are different types of systemic vasculitis, and the problems that result can range from mild to very severe and life-threatening. Even people with the same type can be affected in very different ways, and to different degrees, meaning that individual care needs are very different.
While systemic vasculitis is not curable and can keep coming back, it can be controlled using drugs that suppress the immune system. Early recognition and diagnosis, followed by appropriate and effective treatment, is important to prevent damage to the body. However, systemic vasculitis is not easy to diagnose. As well as being rare, it can affect many different organs such as the kidneys, heart, lungs, nerves, ears and eyes. This results in a variety of possible symptoms that can easily be confused with other conditions.
Other types of vasculitis are not covered by this website. These include those that occur in people who have other conditions such as rheumatoid arthritis or lupus. They also include those that are caused by infections or reactions to certain drugs and chemicals. Often this kind of vasculitis is localised, for example to the skin, and may not need any treatment.
This study is part of a programme of research funded by Versus Arthritis to understand Vasculitis Outcomes In relation to Care ExperienceS (VOICES). (Grant Reference Number: 22088, Chief Investigator Rosemary Hollick).