She saw 26 doctors and had 37 procedures with no diagnosis in sight. Then, an answer.
She saw 26 doctors and had 37 procedures with no diagnosis in sight. Then, an answer.
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How important is your family medical history?
If you've been to a doctor before, you've probably been asked about your family medical history. How important is it actually?
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Nika Beamon thought she was going to die.
The former college athlete always played high-impact sports. Rugby, ice hockey, you name it. Always knocked down but toughing it out. By the time she was a senior at Boston College, though, toughing it out grew impossible. Waking up everyday was a struggle. Aches appeared out of nowhere, even when she wasn't exercising. She ran spontaneous fevers, like she was fighting an infection. Test after test – for mono, for anything – all failed to spit out a diagnosis. She had no family history of diseases; her brothers were perfectly healthy. But everyone agreed on one thing: Something was up.
"I did not have any doctor who didn't think nothing was wrong," the now 52-year-old award-winning journalist says. "Everybody thought something was wrong. They just didn't know what it was."
Fatigue and joint pain plagued her 20s. She suffered two strokes by the time she turned 35. Her lymph nodes swelled constantly, but biopsies showed no cancer. "I don't know who this is, but this doesn't seem like me," she adds. "I felt like I was aging rapidly. It was like, as if you went from 20 to 50 in a day."
Beamon set out on a journey, and 26 doctors, 37 procedures and more than 17 years later, a rheumatologist finally cracked the confounding code: She had immune disorder IgG4-related disease, and all she needed was a blood test to confirm it.
"There's no way I could have been to this many doctors and had this much blood drawn and nobody saw it," Beamon recalls. "(Her doctor) said, 'Well, they wouldn't be testing for it unless there was a reason.'"
I got 14 tests done at this resort: I didn't need most of them.
'Most patients do well'
IgG4-RD is an immune-mediated disorder. When someone has it, their immune system goes into overdrive, producing more antibodies (or immunoglobulins, hence the name) than necessary that disrupt typical organ function.
"It's not cancers or anything," says Dr. Arezou Khosroshahi, associate professor at Emory University School of Medicine. "It's just that they are confused and they are reacting to something." The disease itself is not deadly, but left untreated, the antibodies can infiltrate different parts of the body like the pancreas, lung or liver. For example, if an accumulation of cells block the bile ducts, a patient can develop cirrhosis, or liver damage. The same pattern may pop up across different organs. Another wrinkle: Patients may be asymptomatic.
If you catch it on time, a patient can live a normal life with regular follow-up appointments. But if someone's organ(s) already had severe dysfunction, you'll have to treat any associated consequential conditions, too. "I can't emphasize enough, this is very important, because people think, 'Oh, I've got a steroid and I feel much better, so I don't need treatment,' but then they come back two years later with significant damage. But in general, if this disease is diagnosed on time and treated, most patients do well."
It's a challenging diagnosis, as the disease mimics other conditions. A majority of the time, if the cell accumulation turns into a mass, a doctor will do a biopsy to make sure it's not cancer. As more awareness of the disease grows, a radiologist might look at a CT scan and notice a similar pattern of inflammation or swelling across multiple organ systems that put IgG4-RD into a diagnosis differential.
It mostly affects middle-aged and older men, though anyone can have it regardless of age, gender, race or ethnicity.
Japanese gastroenterologists first recognized the condition in 2006, with Khosroshahi and colleagues at Massachusetts General Hospital identifying it in 2008. The disease was officially named in 2012 at the premier symposium focused on IgG4-RD.
In case you need: Boost your immune system to fight germs
'You still have good days and bad days'
Beamon takes medication and sees all kinds of doctors today to keep her organs in check. She started out with steroids to keep her inflammation down, but they're notorious for rough side effects, not meant to be taken long-term.
IgG4-RD has been typically treated with a taper dose of a steroid like prednisone, followed by off-label immunosuppressive medications. The FDA recently approved new drug Uplizna to treat IgG4-RD, the first to treat the specific condition. It's a monoclonal antibody that targets certain B-cells to inhibit production of IgG4; in a clinical trial, it had an 87% reduction of flare-ups of the disease.
"You still have good days and bad days, and that's the thing," Beamon says of how she currently lives with the disorder. "Depends on when you have a flare or the inflammation is high."
She's coped well with a supportive online community, particularly after she began documenting her journey and writing a book: "Misdiagnosed: The Search for Dr. House."
Beamon hopes anyone searching for a diagnosis advocates for themselves, keeps track of their medical records and brings loved ones to appointments with them. Don't think your doctor knows more about your body than you do, either. Still, she doesn't blame anyone for not figuring out her IgG4-RD sooner.
"I found it when I found the right person who looked outside the box and said, 'forget what she looks like. Forget what they're telling you. Let me just look at what the documents tell me that she might have' and that's how we got there," she says. "But I don't think it was anybody's fault."
Her biggest takeaway, though – apart from do not Google your symptoms too much, because every website will tell you you're dying – keep the faith. "There's always a doctor out there that can help you. You just have to find the right one."
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