'I felt like I was aging rapidly'

Growing up, Nika Beamon always played high-impact sports like rugby and ice hockey. However, when she was a senior in college, she began experiencing strange symptoms, many of which sapped her energy.

Beamon had difficulty waking up and felt sudden aches throughout her body even when she wasn't exercising. She also experienced spontaneous fevers like her body was trying to fight an infection.

Despite countless tests being run, none of them returned a conclusive diagnosis. Beamon also had no family history of diseases that could explain her sudden symptoms.

"I did not have any doctor who didn't think nothing was wrong," Beamon said. "Everybody thought something was wrong. They just didn't know what it was."

In her 20s, Beamon continued to experience fatigue and joint pain. By 35, she had suffered two strokes. She also had lymph nodes that swelled constantly, even though biopsies showed no evidence of cancer.

"I don't know who this is, but this doesn't seem like me," she said. "I felt like I was aging rapidly. It was like, as if you went from 20 to 50 in a day."

A diagnosis comes after years of searching

After 17 years, 26 doctors, and 37 procedures, Beamon finally got a diagnosis.

Following a targeted blood test from a rheumatologist, it was confirmed that she had IgG4-related disease (IgG4-RD), an immune disorder. 

Patients with this disorder have an overactive immune system that produces more antibodies than necessary, disrupting normal organ function. On its own, IgG4-RD is not deadly, but if it is left untreated, excess antibodies can cause significant damage to different parts of the body, including the pancreas, lungs, and liver.

"There's no way I could have been to this many doctors and had this much blood drawn and nobody saw it," Beamon said. However, her doctor told her that "'Well, they wouldn't be testing for it unless there was a reason.'"

The journey to recovery                                                                                                                                       

Currently, Beamon is taking steroids to keep her inflammation down. She is also taking other medication and visiting doctors regularly to ensure that her organs are healthy.

"You still have good days and bad days, and that's the thing," Beamon said. "Depends on when you have a flare or the inflammation is high."

According to Beamon, she doesn't blame anyone for not figuring out her IgG4-RD diagnosis 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," Beamon said. "But I don't think it was anybody's fault."

For other people searching for a diagnosis, Beamon recommends that they advocate for themselves, keep track of their medical records, and have loved ones attend their appointments with them. She also added that people shouldn't think that their doctors know more about their body than they do.

Overall, Beamon encouraged people to keep having hope if they're struggling to find a diagnosis. "There's always a doctor out there that can help you," she said. "You just have to find the right one."