Ashton Kutcher is best known for his role on That '70s Show, but it's his health that's been making headlines in recent days.
Kutcher, 44, revealed that he dealt with a “super-rare form of vasculitis” three years ago, which left his vision, hearing, and balance impaired. The actor shared his medical diagnosis in a clip from an upcoming episode of the National Geographic show “Running Wild with Bear Grylls: The Challenge,” first released by Access Hollywood on Monday.
"It took me like a year to build it all back up. You don't really appreciate it until it's gone," Kutcher said in the clip, referencing his vision, hearing and balance impairments. According to the actor, he's "lucky to be alive," after his health issues.
Despite experiencing such severe symptoms, Kutcher said on Tuesday that he’s made a full recovery.
"Yes, I had a rare vasculitis episode [three years] ago. (Autoimmune [flare] up)," he wrote on Twitter. "I had some impairments […] right after. I fully recovered. All good. Moving on."
Here's what you need to know about this rare disease, how vasculitis can cause symptoms like the ones Kutcher experienced, and how healthcare providers typically treat and manage the disease.
What Is Vasculitis?
Vasculitis is an umbrella term for a family of diseases that all have to do with inflammation of the blood vessels, according to Peter Merkel, MD, MPH, chief of rheumatology, director of the Vasculitis Center, and professor of medicine and epidemiology at the University of Pennsylvania.
"They range from diseases that affect very large arteries such as the aorta—a large artery that comes out of the heart and its branches—to microscopic arteries that feed almost every tissue and organ in the body," Dr. Merkel told Health.
Kutcher did not reveal which specific type of vasculitis he suffered from, and even knowing his specific symptoms—loss of full hearing, sight, and ability to walk—isn't enough to say which iteration of the disease he suffers from.
The National Institute of Health (NIH) names 16 different types of vasculitis, all of which affect different areas of the body with varying degrees of severity.
Vasculitis can refer to any blood vessel swelling—caused by an infection or trauma, for example—but the vasculitis Kutcher is talking about is best characterized as an autoimmune disorder, explained Anisha B Dua, MD, MPH, director of the Vasculitis Center and associate professor of medicine at Northwestern University Feinberg School of Medicine.
“Your immune system is set up to protect you and it should be fighting off bacteria, viruses, everything else. And sometimes your immune system basically goes out of whack and it gets overactive, and starts recognizing parts of your own self as a problem and starts attacking it,” Dr. Dua told Health. “With vasculitis, essentially your immune system is overactive, and it’s attacking and causing inflammation of the blood vessels.”
It's that sustained attack on the body's blood vessels that make vasculitis so dangerous, and often painful, for those who have the disease.
Once the immune system starts wrongly attacking the blood vessels, Dr. Dua explained, those blood vessels flare up and become damaged. That damage can cause them to scar and narrow, restricting the flow of blood. It can also sometimes weaken the vessel so much that it’ll become floppy and lead to an aneurysm, meaning it can balloon up in the body, she said.
And as you might imagine, when the blood isn't flowing properly around the body, the consequences can be severe.
"You start getting a lack of oxygen to the tissues wherever those blood vessels are trying to supply blood. So when you don't have oxygen going then you start getting some of the clinical manifestations that people come in with when they get diagnosed with vasculitis," Dr. Dua said. "But people can feel really unwell for a while."
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Vasculitis Symptoms Are Wide-Ranging
Because there are so many different kinds of diseases under the umbrella of vasculitis, the symptoms associated with it can be incredibly varied—from a heart attack to joint pain.
“Vasculitis can affect any artery anywhere in the body, from your largest artery, the aorta, down to small arteries that you find in your skin,” Randy Ramcharitar, MD, assistant professor of cardiovascular medicine at the University of Virginia, told Health. “The manifestations can be extremely variable.”
The National Heart, Lung, and Blood Institute (NHLBI) names a whole host of possible symptoms linked to vasculitis:
- Ear and nose problems (runny nose, sinus infection, dizziness, hearing loss)
- Eye problems (itching, burning, vision changes)
- Joint pain
- Skin rashes
- Heart palpitations
- Heart attack
- Kidney disease
- High and low blood pressure
Aneurysms, strokes, and heart attacks are dangerous and even deadly symptoms of vasculitis, especially when the disease affects blood vessels in the brain or in and around the aorta, Dr. Ramcharitar said.
For Kutcher, his symptoms are likely associated with the inflammation of the smaller blood vessels near his eyes and ears, Dr. Dua said.
Vasculitis can cause the blood vessels in numerous parts of the eye to swell or become inflamed and cause intense pressure in the eye, both of which can cause vision loss. The same is true for hearing—people can experience loss of hearing for just some pitches, while others will see their hearing fade in and out, or go completely, she explained. The ear is also connected to balance, which could also relate to Kutcher’s issue of feeling out of equilibrium and having issues walking.
"When your ears are affected or some of the signaling in your ears, you can really feel off balance and unable to focus," Dr. Dua said. "You get sort of episodes of dizziness and the world spinning. You can't really sense your place with walking, so it's hard to sort of function."
Or, Dr. Merkel added, Kutcher's trouble walking could be because of inflammation of the blood vessels in the brain or spinal cord.
It's impossible to know the specifics of Kutcher's case simply based on what he's shared with the public at this point, both Dr. Merkel and Dr. Dua agreed. There are so many moving parts when it comes to vasculitis, including how long the symptoms have been going on or which specific type a person is diagnosed with.
Overall, it's this variability and rarity that makes vasculitis sometimes hard to pin down, Dr. Merkel explained.
"It can be fast and come on very quickly or it can be subtle and slow, which leads to difficulties in diagnosis. The diseases are often missed for a while—sometimes days, sometimes weeks, sometimes years," he said. "When they're very bad usually it's diagnosed more rapidly but these are rare diseases and people can miss them."
Tools to Manage, But Not Cure Vasculitis
When vasculitis is caused by a faulty immune response, it's something that can be treated, but can't necessarily be cured.
“I think of them more like chronic diseases, kind of like diabetes, hypertension, things that you have and they can be managed, but they’re not just gone,” Dr. Dua said.
And that process of managing vasculitis isn't always simple.
"I think of it like a fire on your blood vessels," Dr. Dua said. "So you want to shut down that fire and calm things down quickly, as much and as fast as possible to try to prevent damage from happening. And that's usually that first phase of treatment."
The next phase, according to Dr. Dua is a maintenance phase "where we just try to keep everything calm and try to prevent any flare-ups of the disease," she said.
This treatment process—which Dr. Ramcharitar said can take months or even a few years—isn't easy on the body. In addition to anti-inflammatory drugs, immunosuppressant drugs are used to stop the body's attack on its own blood vessels. But that leaves the guard down for other problems to creep in.
"You're always trying to find the perfect balance of how much you need to keep the vasculitis under control, but also make sure that the patients aren't suffering from multiple side effects from the medication, or getting lots of infections or anything like that," Dr. Dua said. "Because a lot of medicines we use can be significantly toxic."
Prevention can also be a struggle for vasculitis doctors. Dr. Ramcharitar said that smoking can sometimes be associated with the disease and that having people quit could help.
There may be some genetic risks involved with developing some kinds of vasculitis, as well as some risks from infections from the hepatitis B and hepatitis C viruses, Dr. Merkel added. However, there's still research to be done to figure out how people can avoid getting the disease altogether.
With the possibility of relapse, patients and doctors have to be vigilant about keeping an eye out for vasculitis cropping up again, and being as supportive and positive as possible.
"Finding support in whatever avenues you can—whether that's your provider or other patients with the disease, or whatever it is—just having a positive attitude and trying to get past some of the hurdles, it's difficult. But I think our patients with vasculitis are really resilient overall," Dr. Dua said. "The field has come a long way in the last 10 or 20 years, we've found a lot more discoveries for how to manage the disease, how to more accurately diagnose the disease."