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What is vasculitis? Ashton Kutcher’s rare disease explained

The causes of the autoimmune condition are not known, and it can be life-threatening.

Actor Ashton Kutcher’s rare autoimmune condition, vasculitis, is a disorder characterized by inflammation of the blood vessels that can be life-threatening. Experts say it’s notoriously hard to diagnose. 

That’s because its initial symptoms — which include fatigue, fevers and weight loss — often apply to so many ailments that doctors don’t immediately suspect that a rare disease is the cause.

“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 revealed his diagnosis in an episode of the show “Running Wild with Bear Grylls: The Challenge” that aired Monday night on National Geographic. 

“Two years ago, I had this weird, super rare form of vasculitis that, like, knocked out my vision. It knocked out my hearing. It knocked out, like, all my equilibrium,” 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 certain ones that will have more of a predilection for kidneys or for your lungs or for the structures in your ear,” said Dua, who is also the director of Northwestern University’s Vasculitis Center. “Whatever organ is downstream from that blood vessel can be affected, and, of course, your blood vessels are everywhere in your body.”

It’s not clear what causes vasculitis or its flare-ups. Dua said that sometimes an illness or a stressful event “sort of triggers this whole cascade 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 vasculitis case is diagnosed, treatment focuses on stopping the inflammation. Patients often are treated with corticosteroids along with immunosuppressants, Goddard said.

“The biggest challenge always is ‘how quickly can we make that diagnosis?’ Because we’ve got to get there very aggressively to treat these people,” he said.

For some people, vasculitis is a one-time event. But many relapse, 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. 

A condition with no clear cause

Vasculitis affects men and women of all races. Some types, such as Kawasaki disease, affect children. Researchers haven’t identified any clear genetic predisposition in those who get vasculitis, Langford said. 

The most common form among adults in North America is giant cell arteritis, according to the Johns Hopkins Vasculitis Center; it can be characterized by fever, headache and jaw and scalp pain. Almost everyone diagnosed with this type of the condition is over age 50.

Vasculitis can be isolating, Dua said. 

“A lot of people don’t really know what you’re talking about when you say you have it,” she said. She added that the pandemic has been particularly tough for vasculitis sufferers because Covid poses additional health risks to people with weakened immune systems — including those who take immune-suppressing medications to treat vasculitis. 

But vasculitis has gotten more attention in recent years, Langford said, leading to a better understanding of the disease and how to manage it.

“There’s a great deal of research going on and trying to understand its causes,” she said.