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 that it is extremely difficult to diagnose.

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

“I think of all the things that rheumatologists have to deal with, vasculitis can be the most difficult to deal with and sometimes the most difficult to diagnose,” said Dr. David Goddard, a rheumatologist and clinical professor of medicine. New York University Grossman School of Medicine.

Kutcher revealed his diagnosis on 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 kind of knocked out all my balance,” Kutcher told Grylls.

He said it took him about a year to recover, adding that he felt “lucky to be alive”.

According to the Vasculitis Foundation, a non-profit organization, there are different types of vasculitis — about 20. Different forms are identified based on the size of the blood vessel affected by them, from the capillaries to the aorta, the main artery that carries blood from the heart to the rest of the body.

Kutcher did not answer questions about what type of vasculitis he has.

The symptoms of vasculitis vary depending on the part of the body it affects. Because vasculitis can attack any blood vessel, each patient’s case will look different, said Dr. Anisha Dua, associate professor of medicine in rheumatology at Northwestern University Feinberg School of Medicine.

“There are some that will have a greater affinity for the kidneys or the structures of your lungs or your ear,” said Dua, who is also director of Northwestern University’s Vasculitis Center. “Any organ downstream from that blood vessel may be affected, and of course, your blood vessels are everywhere in your body.”

It is not clear what causes vasculitis or its flare-ups. Dua said that sometimes an illness or stressful event “triggers this whole event.”

Life-threatening risks include kidney failure, aneurysms and strokes in vasculitis pose, and bleeding into the lungs. Data on the mortality rate of the condition are scarce, but rheumatologists said that advances in diagnostic capabilities and treatment options have led to an increase in survival rates.

Once a vasculitis case is diagnosed, treatment focuses on stopping the inflammation. Goddard said patients are often treated with corticosteroids along with immunosuppressants.

“The biggest challenge is always ‘How soon can we get diagnosed?’ Because we have to get there very aggressively to treat these people,” he said.

For some people, vasculitis is a one-time occurrence. But many relapse, Dr., director of the Center for Vasculitis Care and Research at the Cleveland Clinic. Carol Langford said.

“It can happen within a short period of time, by which I mean months to years, and there are some that can’t stop until much later. And there’s nothing we can really predict,” he said.

In a tweet Monday evening, Kutcher shared an encouraging update about his recovery: He said he is now well enough to run the New York City Marathon.

A condition for no apparent reason

Vasculitis affects men and women of all races. Some types, such as Kawasaki disease, affect children. Langford said the researchers didn’t identify any clear genetic predisposition in those who got vasculitis.

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

Vasculitis can be isolated, Dua said.

“Many people really don’t know what you’re talking about when you say you have,” she said. He said the pandemic has been particularly difficult for vasculitis sufferers because Covid poses additional health risks for people with weakened immune systems – including those who take immune-suppressing drugs to treat vasculitis.

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

“There’s a lot of research going on and trying to understand the reasons for this,” she said.

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