Information and support for patients living with vasculitis
Find answers to common questions and practical guidance to help you understand vasculitis, including information on treatment, research and clinical care. Please note that UKIVas cannot respond to individual patient enquiries. For information, advice or support, please contact Vasculitis UK.
About Vasculitis
- Vasculitis refers to a group of conditions that cause inflammation of blood vessels. This can reduce blood flow and affect different organs.
- Vasculitis is a rare disease. The number of people affected varies depending on the type, but overall it is uncommon.
Yes but it is rare. There are many types of vasculitis and they are usually defined by the size of the blood vessels which are involved.
- Small vessel – usually involves the skin such as IgA Vasculitis
- Small artery – includes Granulomatosis with polyangiitis (GPA), Eosinophilic granulomatosis with polyangiitis (EGPA)
- Medium artery – includes Polyarteritis Nodosa, Kawasaki disease
- Large artery – includes Takayasu’s arteritis
- In the UK IgA vasculitis (formerly Henoch-Schönlein purpura) is the most common. It affects 10-20 per 100,000 children annually, usually causing a self-limiting rash, joint pain, and abdominal pain.
- Most forms cannot be cured, but treatment can control the condition and help many patients achieve remission.
- Again most forms cannot be cured, but treatment can control the condition and help many patients achieve remission. However, usually children with IgA vasculitis do not need special treatment but will need to be carefully monitored and potentially take medicines. If a specific organ has been affected, for example the kidneys, children will require specialist monitoring and treatment.
Diagnosis & Treatment
- Diagnosis usually involves blood tests, scans, and sometimes biopsies. There is no single test, and your specialist will decide what is needed.
- Treatment often includes steroids and other medicines to reduce inflammation and control the immune system.
- Some treatments can cause side effects, especially with long-term use. Your healthcare team will monitor you closely.
- Treatment varies depending on the type and severity. Some patients need treatment for months to years, with ongoing monitoring.
- Many patients achieve remission with treatment. Some may experience relapses and require long-term follow-up.
Appointments & Care
- You may wish to ask about your diagnosis, treatment options, side effects, duration of treatment, monitoring, and symptoms to watch for.
- Yes. Most patients require regular monitoring, even when the disease is well controlled.
- Care is usually provided through specialist hospital teams, often within NHS centres experienced in vasculitis care.
Support & Living with Vasculitis
- Vasculitis can affect physical health, mental wellbeing, work, and relationships. Some people experience fatigue or emotional challenges.
- UKIVas does not provide direct patient support. For advice and support networks, visit Vasculitis UK.
- Yes. Vasculitis UK offers support groups and community resources across the UK.