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Salma has granulomatosis with polyangiitis (GPA), an ANCA associated vasculitis. Since being diagnosed, she has developed other health problems including steroid-induced diabetes, chronic kidney disease, fibromyalgia and high blood pressure.
Salma has been medically retired for 15 years from her job as a hospital administrator. Her primary language is English, but she uses Gujarati with her husband. Ethnic background: Anglo-Indian.
Marie has been treated for giant cell arteritis (GCA), a type of systemic vasculitis. She also has polymyalgia rheumatica (PMR), fibromyalgia, and knee pain. She struggles with fatigue and is finding it hard to reduce her use of steroids.
Marie lost her job as a result of ill health. She is single and has moved back in with her elderly mum. Marie is passionate about the benefits of singing...
Nicky has Behçet's disease, a type of systemic vasculitis with symptoms including ulcers, swelling, rashes and fatigue. Nicky is grateful to the dentist who recognised that she needed specialist investigation and treatment.
After a career in the police and Special Branch, Nicky is self-employed running a transcription company. She is separated. Ethnic background: White British.
Gail has eosinophilic granulomatosis with polyangiitis (EGPA), an ANCA associated vasculitis previously known as Churg-Strauss syndrome. She;d like services to take a team approach when people with unexplained symptoms aren't responding to treatment.
Gail is medically retired from her work as a health visitor. She has just started a part-time job in social support. Gail is divorced with two grown-up daughters and is...
Systemic vasculitis affected Dawn's ears, nose and eyes. She needed a major operation to repair her collapsed nose. Dawn is keen that doctors and nurses have support and training to recognise vasculitis so it can be treated before further damage is done.
Dawn worked for 17 years as a learning support assistant in a mainstream primary school. She left two years ago to care for her parents. Dawn lives with her father,...
Jane has two rare autoimmune diseases. Primary biliary cholangitis, affecting her liver, developed in 2005. Then, after several years of additional symptoms, MPO positive AAV was diagnosed in 2017. Jane has learnt to enjoy life at a slower pace.
Ill health meant Jane retired four years ago from her career as a pharmacist then spent two years as a shop assistant before giving up work completely. Jane is married...
Wendy has granulomatosis with polyangiitis (GPA), an ANCA associated vasculitis affecting her lungs, eyes, nose, mouth, ears, nerve endings and joints. Her vasculitis is difficult to control, and she has given a lot of thought to living and dying well.
Wendy is medically retired from her career as an occupational therapist, where she worked in clinical practice, teaching and research. Wendy is divorced, with grown up children. Ethnic background: White...
Lynn has atypical Behçet's disease (a systemic vasculitis), which has damaged the small blood vessels in her heart. She also has ankylosing spondylitis. Lynn wants people to understand just how hard it is to go through a lengthy diagnostic odyssey
Lynn is medically retired from her role as an intensive care nurse and now uses her time and experience for Patient and Public Involvement in research. She is married with...
