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Rare Diseases

Finding Strength and Inspiring Others After 17 Years of Misdiagnosis

A TV news writer and producer with a career spanning three decades, Nika Beamon has made a living telling other people’s stories. After 17 years of living with a mystery disease and receiving countless inaccurate diagnoses, she’s turned her focus inward to share her rare disease story with others in similar situations and those caring for them.

Nika Beamon was a promising student at Boston College and a notable athlete. So it was bizarre when she developed an illness that just wouldn’t go away.

“I was a pretty well-tuned and well-oiled machine,” said Beamon, who was 5-foot-9 and 122 pounds when she started feeling symptoms at age 20. “So, the fact I was breaking down, running spontaneous fever, suffering pain — but not from an injury — I knew something was wrong.”

She said she was lucky that doctors believed her that something was underlying, but race often played a factor in not looking too deeply at what that condition might be and caused misdiagnosis.

“They would say, ‘Oh, she’s Black, so therefore she has lupus. She must have sarcoidosis,’” Beamon said. “‘She must have rheumatoid arthritis because that’s what they have.’ And they did test me for all of those things.”

But the tests always came back negative. For 17 years, Beamon was misdiagnosed.

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A storied career

Beamon kept managing the disease’s symptoms but continued to feel ill. That didn’t stop her from working a storybook career.  

She’s been a news writer and producer in the ABC family for 25 years — including 2.5 at ESPN Classic. She currently works at WABC in New York. In 2001, she was part of the news team that won a Peabody Award for its coverage of the 9/11 terrorist attacks, and she has won two individual New York Emmys.

While she’s succeeded at her dream job, Beamon admits her illness and misdiagnosis held her back. She could have advanced her career by freelancing (she had opportunities at “Good Morning America” and other national powerhouses), but needed to keep her full-time gig to maintain health insurance.

“I wasn’t married, so I had no option to get health insurance before Obamacare,” she said. “I couldn’t buy health insurance, because I had a preexisting condition.”

She’d had two strokes by the time she was 32 and her health continued to decline. Doctors also advised her to limit stress.

“I thought that was hilarious, because I work in local news,” she said. “Every day something falls down, and I run toward it.”

At long last

At 37, Beamon received long-awaited news. While driving through the Lincoln Tunnel, she got a phone call from her doctor. She could finally put a name to the ailment she’d lived with for almost half her life.

“I just thought, ‘Thank God, they’ve got it,’” she said. “They may not be able to fix it, but at least I know what it is. Now I was able to start using my own skills, to look into treatments, to look into things that could make my life infinitely better than it had been to that point.”

The disease was identified as IgG4-related sclerosing disease — just IgG4 for short. The autoimmune disorder involves inflammation of one or more organ systems in the body, which can cause a host of problems contributing to misdiagnosis, as well as pancreatitis and damage to other organs. It only recently gained recognition as a novel disease.

Doctors got her on a new treatment plan with fewer, more targeted drugs. She said those that can reduce inflammation, like hydroxychloroquine, have been best for managing symptoms. 

While diagnosis was a relief, Beamon will never truly be out of the woods. Like many rare diseases, little is known about IgG4. There’s no cure, and doctors advised her against having kids for fear of passing along the condition.

She’s experienced several complications in the 12 years since diagnosis, including developing pancreatitis. And one morning, she was unable to walk.

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“My then-fiance, now-husband, was in the bathroom, and I said, ‘How do you get up in the morning?’ and he said, ‘I don’t know,’” Beamon said. “I felt like I was screaming — I wanted to stand up, but somehow my legs weren’t moving, which is the weirdest feeling.”

Inflammation along her spine had left her unable to use her legs. With anti-inflammatory treatment, she’s still able to walk today, but the episode served as a reminder to not take anything for granted, especially on days she feels well.

Sharing her story

In the 17 years she went misdiagnosed, Beamon was extremely private about her struggles — almost none of her coworkers were aware she even had an autoimmune disorder. She credits a famous actress with getting her to come out of her shell.

“A coworker of mine saw that Rita Wilson was hosting a contest for The Huffington Post,” Beamon explained, “and she was asking people to submit essays.”

One thing I know as a journalist is that when you tell your story, you tell somebody else’s. And there are a lot of “somebody elses” in my story.

Nika Beamon

Beamon’s coworker encouraged her to write about her rare disease journey and misdiagnosis. She submitted a piece titled “My 17-Year Quest For The Correct Medical Diagnosis.”

“I called my boss and said, ‘Well, apparently my essay got picked,’” Beamon explained. “She’s like, ‘Oh, that’s so fabulous! What’s it about?’ That was when I realized I was probably going to have to share my story with the whole station.”

She then got encouragement to expand on that essay and write a book about her experience and misdiagnosis.

“And I thought, ‘That’s a pretty awful idea,’” Beamon said. “One thing I know as a journalist is that when you tell your story, you tell somebody else’s. And there are a lot of ‘somebody elses’ in my story.”

But after some reflection and conversations with those “somebodies” who would be featured in the story, she decided that sharing her story could do a lot of good for patients, their loved ones, and their healthcare providers. 

Beamon forged ahead with writing the book when her prognosis took a turn for the worse. Diagnosed with chronic lymphadenopathy with suspicion of lymphoma several years beforehand, Beamon endured four surgeries from 2013-14 to remove lymph nodes. But the condition started to flare up again.

“When the lymphoma came back, I had an agent deal with Serendipity Literary in Brooklyn, and they were like, ‘We think we can sell it,’ and I was like, ‘I think I need to do it myself, because I think I’m going to die,’” she said.

While fearing for her life, she self-published “Misdiagnosis: The Search for Dr. House” in 2014. The release attracted attention from some notable authors and other personalities, such as Wes Moore (now the governor of Maryland), Richard Cohen (author of “Blindsided” and “Strong at the Broken Places”), and Marya Hornbacher (“Wasted: A Memoir of Anorexia and Bulimia,” “Madness: A Bi-Polar Life,” and “Waiting: A Non-Believer’s Guide to a Higher Power”), all of whom wrote blurbs praising Beamon’s work.

In 2017, one of Beamon’s friends met Rhonda McCullough, the widow of comedian Bernie Mac, who died in 2008 as a result of sarcoidosis. After learning about the book, McCullough wrote a new foreword for it.

“I still haven’t met most of these people, but the fact that they believed in what I had to say, and they — sadly — all had experiences with other people living with autoimmune diseases, made me feel a lot better about the fact that I decided to do this,” Beamon said.

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Finding support

One thing Beamon stresses to others navigating their own rare disease journeys and misdiagnosis is the importance of being your own advocate in the healthcare system, rather than a passive participant. 

“Constantly listen to your body,” she said. “The doctors would give me a medication for something, but then something else would start going wrong. And I knew that this couldn’t be right, because I’m still not feeling like the person who I know I am.”

Autoimmune disorders can impact anybody. Beamon was in essentially perfect health at the onset of her condition — a sterling example of how no one is immune.

“With anybody who’s chronically ill, your first question is always, ‘Why me?’” she said. “And then you go, ‘Well, now that it’s me, what does the future hold?’

“It was important for me to show other people that life isn’t over just because you’re sick — there are still so many other things you can do. It may limit some of your possibilities, but it doesn’t end them.”

She also says that persevering from the onset of her diagnosis at 20 to now (she’s turning 50 in December) has “taken a village.” While long keeping her struggles and misdiagnosis out of the public eye and away from coworkers, she said she’s found strength by confiding in family, friends, and her husband, Marc. 

The couple eloped in Las Vegas last year, but Beamon said the chapel — much to their dismay — couldn’t source an Elvis impersonator.

“[Marc] always says ‘Our problems are not your disease,’” Beamon said. “That’s just something we get through together. We have the same relationship problems as everybody else. What you learn is that ‘in sickness and in health,’ especially in this kind of relationship, just takes on a whole new meaning.”

Editor’s note: Nika and Marc had a more formal wedding ceremony in March in New Jersey for their Northeast friends and family. And, yes, they hired an Elvis impersonator.

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