What is vasculitis? What is Ashton Kutcher’s rare illness?
Ashton Kutcher illness: Ashton Kutcher’s rare autoimmune illness, vasculitis, is a potentially fatal disorder characterized by inflammation of the blood vessels. According to experts, it is notoriously difficult to diagnose. Due to the fact that its initial symptoms, which include exhaustion, fevers, and weight loss, are similar to so many other conditions, clinicians do not immediately detect a rare disease.
“Of all the things that I think rheumatologists have to deal with, vasculitis can be both the toughest to deal with and sometimes be the most difficult to make a diagnosis in,” said Dr. David Goddard, a rheumatologist and clinical professor of medicine at the New York University Grossman School of Medicine. Kutcher said what was wrong with him on an episode of “Running Wild with Bear Grylls: The Challenge” that aired on National Geographic on Monday night.
“Two years ago, I got a weird, extremely rare form of vasculitis that, like, made me blind. It stopped me from hearing. It really threw me off balance,” Kutcher told Grylls. It took him about a year to recover, he said, adding that he felt “lucky to be alive.”
There are various types of vasculitis nearly 20, according to the Vasculitis Foundation, a nonprofit organization. Different forms are identified based on the size of the blood vessel they affect, from the capillaries to the aorta, the main artery that carries blood from the heart to the rest of the body. Kutcher didn’t respond to an inquiry about which type of vasculitis he had.
The symptoms of vasculitis vary based on the part of the body it affects. Because vasculitis can attack any blood vessel, every patient’s case will look different, said Dr. Anisha Dua, an associate professor of medicine in rheumatology at the Northwestern University Feinberg School of Medicine.
“There are some that are more likely to attack your kidneys, lungs, or the structures in your ear,” said Dua, who is also the director of the Vasculitis Center at Northwestern University. “Any organ that gets blood from that blood vessel can be hurt, and blood vessels are, of course, everywhere in your body.” Vasculitis and its flare-ups aren’t easy to figure out. Dua said that sometimes a health problem or something stressful “kind of sets off this whole chain of events.”
Among the life-threatening risks, vasculitis poses are renal failure, aneurysms and strokes, and bleeding into the lungs. Statistics on the condition’s mortality rates are scarce, but rheumatologists said survival rates have increased thanks to advances in diagnostic capabilities and treatment options.
Once a person has been diagnosed with vasculitis, treatment is aimed at stopping the inflammation. Goddard said that corticosteroids and immunosuppressants are often used together to treat patients.
“How quickly can we make that diagnosis? That’s always the biggest problem.” Because we have to get there quickly to help these people,” he said. For some people, a vasculitis is a one-time event. But many relapses, said Dr. Carol Langford, the director of the Center for Vasculitis Care and Research at the Cleveland Clinic.
“That can occur within a short period of time, by which I mean months to years, and there are some that may not relapse until a much later point in time. And there’s nothing we can really predict with that,” she said.
In a tweet Monday evening, Kutcher shared an encouraging update about his recovery: He said he’s now well enough to run in the New York City Marathon.
Before there are a bunch of rumors/ chatter/ whatever out there. Yes, I had a rare vasculitis episode 3yrs ago. (Autoimmune flair up) I had some impairments hear, vision, balance issues right after. I fully recovered. All good. Moving on. See you at the 2022 NY Marathon w/Thorn
— ashton kutcher (@aplusk) August 9, 2022
A Condition With no Clear Cause
Vasculitis affects people of all races, both men and women. Some of them, like Kawasaki disease, happen to kids. Langford said that researchers haven’t found any clear genetic risk factors for vasculitis in people who have it.
The Johns Hopkins Vasculitis Center says that giant cell arteritis is the most common type in adults in North America. It can cause fever, headaches, and pain in the jaw, scalp, and neck. Almost everyone who has this type of illness is over the age of 50. Vasculitis can make a person feel alone, said Dua.
“When you say you have it, a lot of people don’t really know what you mean,” she said. She also said that the pandemic has been especially hard on people with vasculitis because Covid increases the health risks for people with weak immune systems, like those who take drugs to treat vasculitis that weaken the immune system.
But vasculitis has gotten more attention in recent years, Langford said, leading to a better understanding of the disease and how to manage it.
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