Inside the rare disease that 'knocked out' Ashton Kutcher's hearing, vision and balance for a year

Last month Ashton Kutcher revealed during an episode of National Geographic's "Running Wild with Bear Grylls: The Challenge" that in recent years he’d been battling a rare autoimmune disease called vasculitis.

"Like two years ago, I had this weird, super-rare form of vasculitis," he said. “Knocked out my vision, knocked out my hearing, knocked out like all my equilibrium. It took me like a year to like build it all back up.”

After the episode aired, he took to Twitter to further clarify that the “Running Wild” episode was filmed three years ago: “Before there are a bunch of rumors/ chatter/ whatever out there. Yes, I had a rare vasculitis episode 3 yrs ago. (Autoimmune flair up) I had some impairments hear, vision, balance issues right after. I fully recovered. All good. Moving on.”

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Regardless of when the flare-up occurred, it clearly made an impact on the 44-year-old actor and activist, who has two children with wife and fellow actor Mila Kunis.

"You don't really appreciate it until it's gone, until you go, 'I don't know if I'm ever gonna be able to see again. I don't know if I'm gonna be able to hear again, I don't know if I'm going to be able to walk again," said Kutcher. "I'm lucky to be alive."

Kutcher is not exaggerating on that last point: In 2014, actor-director Harold Ramis succumbed at age 69 to complications from vasculitis, four years after he was first stricken with it.

Understanding vasculitis

Vasculitis is an all-encompassing term that refers to inflammation of blood vessels. When this occurs, an array of potential conditions and internal damage can result.

“Vasculitis can affect any blood vessel in the body — from the largest (the aorta) to the smallest (the capillary),” explains Cleveland Clinic rheumatologist and advisor to the Vasculitis Foundation Dr. Carol Langford. “Vasculitis can result in either 1) narrowing or occlusion of the blood vessel or 2) the thinning and/or weakening of the blood vessel causing it to widen (called an aneurysm) or to lose structure. This can cause bleeding into the surrounding tissue. The consequence of either will result in injury to the tissues and/or organs that the affected blood vessel is providing blood to.”

Langford stresses that vasculitis is not a single disease but rather should be viewed as a wide range of potentially interrelated conditions. One broad way to look at vasculitis is to differentiate whether it’s occurring as a primary or secondary process, says Langford.

Primary vasculitis refers to a family of unique autoimmune diseases where vasculitis represents the main reason for tissue and organ injury. Conversely, secondary vasculitis is when the disease occurs in the setting of another underlying systemic disease or trigger (such as side effects from medication or the aftereffects of an infection).

Primary vasculitis is the more serious, rare — and often misdiagnosed — condition.

Diagnosis comes after doctors analyze a patient’s history and onset of symptoms along with the results of a wide array of tests that include blood tests, biopsy, blood pressure, urinalysis, electrocardiogram (EKG), echocardiography, chest X-rays, lung function tests, abdominal ultrasound, computed tomography (CT) scan, magnetic resonance imaging (MRI) and angiography.

The medical community currently recognizes more than a dozen unique forms of primary vasculitis notes Langford.

“These forms can be differentiated from each other by a range of different factors — including the patterns of organs that are affected, the predominant size of blood vessel that is affected, laboratory results, imaging results, and/or characteristic features related to the appearance of the blood vessels and tissue under a microscope,” Langford says.

The symptoms a person might experience from vasculitis are generally based on the organ(s), tissue(s) and/or blood vessel(s) affected by the vasculitis, says Langford.

“Because of this, there are a wide range of symptoms that a person with vasculitis might have when they are first diagnosed and during the course of their illness,” she says. There is really no one set pattern of symptoms that a person with vasculitis will have.”

The Mayo Clinic lists some of the “general” early symptoms as fever, headaches, fatigue, weight loss and body aches. Among the most commonly affected body parts are the digestive system, eyes, ears, hands, feet, lungs and skin.

Of course, because the disease is rare and many of the early symptoms may mimic other more common conditions, primary vasculitis can be challenging to diagnose.

Vasculitis can occur at any age

There are no specific risk patterns associated with primary vasculitis, but Langford said there’s copious research being conducted to better understand the disease.

“Vasculitis can occur in people of all ages, but most forms tend to have common age-of-onset patterns,” explains Langford. “Examples can include Kawasaki disease, which is seen almost exclusively in children — whereas, at the opposite end of the spectrum, is giant cell arteritis, which has an average age of onset in the 70s.”

The form of one’s vasculitis determines what medications and dosages are used to help allay symptoms.

“Most forms of vasculitis require treatment with medications that suppress the immune system and/or reduce inflammation,” Langford says.

As with most autoimmune diseases, the goal with vasculitis treatment is to put the disease into remission because there is no cure — and relapse remains an unpredictable lifelong possibility.

The Vasculitis Foundation notes that the very nature of this rare, mysterious condition means that the likelihood and “pattern of relapses that people will experience is very individual.”

If you suspect you or a loved one is suffering from some form of vasculitis, visit vasculitisfoundation.org to learn more.

This article originally appeared on Palm Beach Post: Ashton Kutcher battled vasculitis. How rare is the disease? What to look for.