Here, you can find any of the interviews on this site.
Isabella has eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA associated vasculitis previously known as Churg-Strauss syndrome. Isabella would welcome the opportunity to see a vasculitis specialist as she has some unanswered questions.
Isabella is a retired local government administrator. She lives on a remote island and is married with two grown-up daughters. Ethnic background: White Scottish
Sharon has microscopic polyangiitis (MPA) PR3, a type of ANCA associated vasculitis. This affected her kidneys badly, and she has had a kidney transplant. She says she can do the things she enjoys by planning carefully and always being ready to adapt.
Sharon worked full-time in early years education. She hoped to return but ill-health has made this impossible, and she resigned three months ago. Sharon is married with three grown-up children....
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...
Melissa has Behçet's syndrome, a systemic vasculitis which causes oral and genital ulcers, skin lesions, fatigue, and joint pain. She found an electric wheelchair liberating, but it is an ongoing challenge to control the disease and prevent infection.
Melissa is completing a master’s degree, where she is interviewing people to understand the disabling effects of mouth ulcers. During the COVID-19 pandemic she is back living with her parents....
Angharad has Takayasu arteritis, a form of systemic vasculitis which affects large blood vessels. She first had symptoms at 17 and was diagnosed at 24. She would like young women to be taken seriously when they are navigating the healthcare system.
Angharad is a full-time mental health worker. She lives with family and is single. Ethnic background: White Welsh.
After four years of a purple rash which came and went, Katy was diagnosed two years ago with urticarial vasculitis. She has been managing it with steroids but is due to start a new drug, dapsone.
Katy works full-time as a dental nurse and lives with her mum. Ethnic background: White Scottish.
Jeremy has microscopic polyangiitis (MPA), a type of AAV affecting his kidneys. The kidney problem was picked up at an annual heart condition check-up and his vasculitis remains relatively benig thanks to timely treatment to suppress his immune system.
Jeremy is a retired railway consultant who still takes on occasional projects. He lives on his own. Ethnic background: White British.
Since Holly suddenly developed granulomatosis with polyangiitis (GPA) - an AAV - aged 19, her health has deteriorated due to flares, medication side effects and additional illnesses. The struggle to access disability benefits has made it harder to cope.
Holly previously lived with friends and her ex-partner and is now back with her mother, who is also her carer. She is not well enough to work or go to...
Mo has granulomatosis with polyangiitis (GPA). She had three years of severe symptoms, including going deaf in one ear, before she was diagnosed. Mo leads a local support group and is pleased she has encouraged clinicians to think about quality of life.
Mo retired a year ago from her part-time occupational health nurse post and her nursing career. She is married with two grown-up children who, at the time of interview during...
