Tuberculosis cases in the US are slowly rising, but diagnosis can be difficult.
Kate O’Brien was living in New York City and pregnant with her second son when she developed what she thought was an awful cold.
“I was going to all these different doctors, and I was trying to just figure out what was wrong with me,” she said.
She spoke to doctor after doctor, and got diagnosed with everything from mono to acid reflux, but none of the treatments helped.
“It had just been like months and months and months of being very sick, the disease was progressing very quickly, and I was losing weight. I had no appetite,” she said. “I was feeling so awful, and my loved ones were really worried about me, but my doctors just weren't.”
Finally, she went to urgent care. And the doctor asked if she had a history of eating disorders.
“I just cried the whole cab ride home to Brooklyn,” she said. “I was just thinking, I'm really cooked, you know, I'm done, I'm losing this baby, I'm gonna die, and I just cried.”
She was eventually admitted to the hospital. Two weeks into her stay, she was given a chest x-ray and was diagnosed with tuberculosis.
It took four months from the time her first symptoms appeared to finally being told she had TB.
Unfortunately, this delay between when someone starts to show symptoms and actual diagnosis is all too common in the US.
But what is TB?
While the name itself might bring to mind images of consumptive poets coughing blood into handkerchiefs, tuberculosis isn’t an illness exclusive to Victorian England, and it’s still the deadliest infectious disease in the world.
Tasha Pascal of Northern Nevada Public Health says that above anything else, TB is complicated.
“There's two types of tuberculosis,” she said. “One that is latent tuberculosis infection, or what we also call inactive TB. So it's like the bacteria is sleeping in the body, most people won't even know they have the bacteria in the body.”
Latent TB treatment can take three to six months, depending on factors like drug resistance and lifestyle. It is important to treat because it can turn into active TB.
Active tuberculosis is when patients start to show symptoms and spread the disease.
The most common type of active TB is pulmonary, where the bacteria attack your lungs, but it can attack other parts of the body as well, such as bone or the lymph nodes.
In the modern era, TB is treatable with a variety of medications, mostly pills, and the Washoe County TB Clinic offers its services free of charge to help prevent outbreaks.
A standard treatment regime for active TB takes four to nine months, depending on drug resistance. But at the end of that regimen of pills, TB should be gone.
But often, like with O’Brien, diagnosis is more complicated than treatment.
Pascal said this isn’t just a problem on the East Coast, she sees it here in Nevada too.
“[People with TB will] get diagnosed over and over and over again with pneumonia until they're really, really sick, and they have a big what we call cavity, or big kind of hole in their lung,” she said. “And then finally at that point, once they're unfortunately pretty sick, then it's caught.”
In April, Northern Nevada Public Health moved its tuberculosis clinic into a new, bigger building. Previously, they were in a small, gloomy basement. Pascal said the new clinic helps patients feel like they are being taken seriously.
She said a lot of medical professionals, outside of the clinic, just don’t think to look for TB.
One example of this in Washoe County is when hospitals take samples from patients to help diagnose an illness. These samples are often sent to a lab that doesn’t automatically do a rapid TB test. But Nevada’s state lab does have the ability to have TB results in under 24 hours, even when it isn’t specifically requested. Some medical professionals just don’t think to send samples there, which delays the diagnosis.
And this delay has lasting impacts.
“I'll have long-term lung damage for the rest of my life, really only one good lung, because of how long it took and how long the disease had a chance to kind of grow,” O’Brien said.
She now helps run an organization called We Are TB, which offers support to current TB patients and survivors, many of whom deal with lasting health problems.
Pascal said the problem of late diagnosis comes down largely to education.
Because the U.S. has historically had strong TB prevention, many medical providers have had very little education on it, or just don’t think about it.
“We need more education out there for TB,” Pascal said. “I think that's the most important thing that we can do to change that.”
According to the CDC, symptoms of active TB can include a cough that lasts longer than three weeks, coughing up blood and loss of appetite. Pascal said that if you think you might have TB, you should reach out to your healthcare provider or the Washoe County TB Clinic.
