After I was diagnosed with systemic urticarial vasculitis in January 2018, I took to Google to see what other people’s experiences with vasculitis were like. The only celebrities that came up on my original search were Janet Leigh and Harold Ramis — and both, unfortunately, had died from complications from vasculitis.
As a then-20-year-old living with debilitating fatigue, chronic pain, and some respiratory issues, those results did not help the dwindling hope I had that my life would move forward. My vasculitis did improve through medication management and pacing, but as someone who lives with a rare disease, I felt so alone. How “common” a form of vasculitis is depends on the form, although they are all considered rare diseases. For example, Behcet’s Disease affects 3 to 5 per 100,000 people in the United States, and IgA vasculitis affects around 20 per 100,000 people nationwide.
Then, in late July of this year, Ashton Kutcher shared that he also has vasculitis, which is actually a family of disorders that involve the blood vessels being inflamed. While his flare-up was under control after a year of treatment, Kutcher experienced symptoms that made him afraid that he would lose his vision, hearing, and his ability to walk.
Kutcher revealing that he has vasculitis — he did not specify which kind — can help newly-diagnosed vasculitis patients feel less alone, as he vocalized well how scary the onset of vasculitis symptoms can be. I had a hard time sharing with my friends and family initially because I did not understand what was happening to me. Without going into specifics of his treatment, Kutcher also said it took a year for him to recover from his flare-up, but he did get better. People have very different experiences with vasculitis, with some having flare-ups of this condition like Kutcher described, and others experiencing symptoms that just never go away.
Anisha B Dua, MD MPH, the program director of rheumatology at Northwestern Medicine, treats patients with vasculitis. She says that Kutcher coming forward can help patients envision “full lives” once their vasculitis is more managed.
“Knowing that others have the same disease [and] have gone through some rough patches but have still come through living full lives is very compelling, and gives hope to patients who aren’t sure what to expect,” Dr. Dua says.
Anca Askanase, MD, a rheumatologist at ColumbiaDoctors and associate professor of medicine at Columbia University Medical Center, also told me that she hopes Kutcher sharing his experience with vasculitis can be helpful for her vasculitis patients. She notes that Selena Gomez sharing her experience with lupus helped some of the young women she treats who have the same debilitating autoimmune disease.