Over the years, Nika C. Beamon has faced a staggering 37 medical procedures, each one a piece of a complex puzzle that would eventually lead to a diagnosis of the multi-organ inflammatory disease, IgG4-related disease (IgG4-RD). Her journey is one of resilience, patience, and a relentless pursuit of answers.
It all began with a series of bewildering symptoms that emerged during her undergrad years at Boston College. Nika experienced unexplained fatigue, recurrent fevers, and relentless joint pain. “We started to realize my junior year in college that something wasn’t quite right,” she says. “But, of course, you go to the clinicians there, and they tell you, you have mono.”
Her health continued to spiral, with new symptoms and more misdiagnoses. “I got sicker and sicker…. spontaneous fevers, joint pain, [and] now other strange things,” recalls Nika. “Over the years, I’ve had extensive gastro reflux disorder; I’ve had pancreatitis, at some point, I’ve had non-alcoholic fatty liver disease…I’ve had pseudo tumors, just cysts that appear random places, and chronic lymphadenopathy, where my lymph nodes had been swollen…I had seven surgical lymph node biopsy and removals one year, and then had to repeat it the following year because they suspected cancer.”
When she entered her 30s, Nika’s health challenges “got even more interesting,” she says. She experienced two strokes and two transient ischemic attacks (TIAs). These neurological events left her medical team puzzled, and to her frustration, they conducted multiple tests for conditions commonly found in African American women, despite her symptoms not aligning with those conditions.
“You must have lupus, you must have sarcoidosis, you must have rheumatoid arthritis, you must have sickle cell anemia, you must have something that’s common for people who are African American,” she recalls. “And even though I did not, they would just repeat those tests because they didn’t know what else to do.”
The Road to Self-Advocacy
Nika decided it was time to advocate for herself, recognizing that no one else would care more about her health than she did. She began carrying her medical records, including scans, X-rays, and reports, wherever she went. Drawing on her journalism skills, she began seeking out top rheumatologists.
“I just started making appointments,” she recalls, “And on my third appointment, I saw a rheumatologist here in New York, who at the time was in the top 10 for rheumatologists in the country. I brought in my files, and she said, okay, leave them and come back in a week. And sure enough, I came back in a week, and she writes down on a piece of paper, you have [IgG4-RD]. First, it was a relief. And then I looked at the paper and was like, what the hell is that? I had no idea what IgG4-RD was — it meant nothing to me, it meant nothing to anybody that I told it to.”
A Successful Career Despite IgG4-RD
For years, Nika kept her health struggles under wraps, with few of her colleagues aware of her disease. Her career flourished. She has an impressive 25-year track record as a newswriter and producer within the ABC family, including a stint at ESPN Classic. She currently holds a role at WABC-TV in New York, marked by her significant contributions, including a Peabody Award for their exceptional 9/11 coverage and two New York Emmy awards.
Sharing Her Journey Became Therapeutic
In 2014, Nika got a nudge from her coworker, who was one of the only people who knew of her IgG4-RD diagnosis, to submit a story to The Huffington Post. “Rita Wilson, who is Tom Hanks’ wife, started a column and was asking for stories, almost like survival stories. I thought, ‘There’s no way. I tell other people’s stories; I don’t tell my own.’” Nika went for it — and her essay was promptly picked.
The essay was a catalyst for her memoir, “Misdiagnosed: The Search for Dr. House,” which was published in 2014, and tells the story of her journey of IgG4-RD, including her hospital trips, procedures, and rollercoaster of emotions that came with it.
She named it after the medical drama series House (also called House M.D). “My now-husband says to me, ‘Did you ever watch the show about a master diagnostician who can diagnose the rarest conditions? Wouldn’t it have been cool if you had that?’”
Nika began watching the show, finding inspiration for the memoir’s title in the process. She explains, “I tell people how I went through the process of trying to figure out what was wrong with me and then figuring out you know, what you need to do to save your life.”
Tips for Self-Advocacy and Living with IgG4
Here, she shares some of the lessons she’s learned about self-advocacy and how to be a proactive patient:
- Listen to your gut. “When your gut tells you something is wrong, don’t give up until you get at least an answer as to what that is. With autoimmune diseases, there is no solution, because there is no cure for most of them. But what you can do is get better treatments.”
- Do your homework. “Make sure that the doctor is right for what’s going on with you, and that you have a doctor who is listening to you.” Ask how you can reach them outside of office hours in case something else pops up or you remember something else.
- Keep a diary of the symptoms. “When the pain starts, write it down. You got to write down your symptoms because you’ll forget one.”
- Bring all your medical records. “It’s important for two reasons. Not only can your other doctor see the information, but you can also see them yourself. You can look at test results and see when they’re out of range.”
- Don’t hide the pain. “We all want to be brave; we all want to be these heroes — be like I can take it. You don’t have to take it; the world is not necessarily designed for you to just take it. You do need to let [your doctor] know that you’re in pain. Never just pick the perfectly happy face on the chart.”
- Ask about financial assistance. Nika advises others to inquire about generic alternatives, patient assistant programs, samples, and financial assistance options to alleviate the financial burden. “These diseases are debilitating for most people. If they give you a pill when it’s very expensive, [ask], does this come as a generic? You don’t want to skip it simply because you can’t afford it; you just got to find another way around it.”
This article was made possible with support from Horizon Therapeutics.
The Health Advocates
Hear more from Nika in an episode of The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. Listen now.
