By Rachel Whetstone from In The Cloud Copy
Jane Edwards is a 45-year-old woman from Stamford, Lincolnshire. She has a rare autoimmune disease called vasculitis. Her immune system attacks her blood vessels, which causes widespread inflammation. Edwards has two different types of the disease. Granulomatosis with polyangiitis (GPA) is a type that affects her small blood vessels, which has left her with lasting damage to her kidneys, eyes, ears, and nose. She also has large vessel vasculitis, which causes inflammation in the main aortic arch which carries blood out of her heart.
In the early days of her disease, Edwards was frequently misdiagnosed. Her process says a lot about the health care system and the importance of taking patients’ symptoms seriously.
Three Years Without Answers
For years, Edwards saw doctors for a variety of symptoms without getting a valid diagnosis. She was told that she had migraines, pneumonia, and just the “after-effects of having children.”
Edwards finally got on the path towards a real diagnosis after a persistent tooth infection. Her wisdom teeth were removed, but the infection continued. She took three rounds of antibiotics without relief from the infection, and the dentist realized something was seriously wrong. He urged Edwards to visit a doctor.
A Long Road to Diagnosis
Blood tests at the doctor revealed inflammation, but answers were still coming slowly. Shortly after that appointment, Edwards woke up with exhaustion and a nosebleed. She went to the emergency room and was kept at the hospital for two weeks while doctors performed a long list of tests and biopsies.
Doctors eventually found fluid around Edwards’ heart. They removed almost a half-liter of fluid. Edwards’ heart started beating more strongly, and she quickly felt much better. A kidney biopsy revealed the final vasculitis diagnosis.
Continuing Stigma
Edwards needs to take many different medications every day to keep the inflammation down. She still suffers from fatigue daily. Because her blood flow is restricted, it is difficult for her to do any kind of exercise, even just walking up a gentle slope. She also finds socializing to be exhausting.
Friends don’t often understand just how limiting the disease can be and strangers are often judgmental, because Edwards still looks healthy and capable. Some days are better than others, but that also confuses people who see Edwards managing activities one day, and then struggling the next day.
The steroids that Edwards take also cause weight gain. People often make assumptions that Edwards is just being lazy. All of the stigma attached to the effects of vasculitis can be very hurtful.
Helping Others
Edwards has received much support from Vasculitis UK, a charity that is dedicated to raising awareness of the disease. The organization also has a Facebook group for people who live with vasculitis to support each other.
Jane Edwards wanted to do even more to help those who suffer from vasculitis. She wrote and self-published a book called Chronic Illness: Learning to Live Behind My Smile. Edwards says to her readers, “I hope, by sharing my experience, I can help you with your journey, dealing with your chronic illness or give you some tools to help you make some sense of living with a chronic condition.”
Although vasculitis has no cure at this time, supportive communities can help all who suffer feel less alone and confused about their symptoms.
