Each year on March 24th we recognize World TB Day. This annual event remembers the day when Dr. Robert Koch announced his discovery of Mycobacterium tuberculosis, the bacterium that causes tuberculosis (TB).

Dodie was shocked when her six-year-old daughter was diagnosed with what she thought was an extinct disease, in the early 90s. “I was flabbergasted,” she said. “I had no idea you could still get tuberculosis. I wanted to learn all I could from that point forward.”

Dodie’s daughter had struggled with frequent upper respiratory infections. As a nurse, Dodie knew to check her daughter’s sputum for blood, but since there was none, Dodie just wrote it off as normal childhood sickness. Dodie also noticed her daughter was underweight, but she wasn’t worried right away, “as the youngest of four, I thought it was just one of those things and she would get a stronger immune system and then she would start gaining weight. But she wasn’t getting better and she was really tired all the time. She started looking really sickly,” Dodie said.

When she developed an enlarged lymph node in her neck, they decided to consult an ear nose and throat doctor (ENT). The ENT first tried to treat it with rounds of antibiotics, but the swelling remained, so he did a biopsy. The biopsy tested positive for tuberculosis, and the finding was confirmed when scans showed cavities in her lungs.

They were sent to a pulmonologist who specialized in TB therapy. He determined a course of treatment that required her to take multiple medications for 13 months. “The medications made her very photosensitive. So much so that she would get blisters on her head, so she had to wear a bonnet anytime we went out, which was devastating for her,” Dodie said.

Photosensitivity is when people become very sensitive to sunlight or other forms of ultraviolet (UV) rays.

The pulmonologist monitored her progress very carefully, by requiring weekly visits where they did tests and adjusted medication. “She had to have her liver enzymes drawn repeatedly, and by the end of treatment she was very afraid of needles.” But as the medication began to work, they were able to visit the doctor less and less, until she was finally cured.

Spreading the Knowledge

This experience made Dodie realize just how little the modern world knew about TB. “At one point the school asked her to stay home. It was during the HIV crisis in 1995 and they were afraid of TB in the same way. My children were so devastated, and though it was a horrible week, it ended up being a teachable moment.”

She decided she wanted to help educate others. After being trained by the American Lung Association, Dodie used her work as a hospital nurse as a platform. “I began going into long term care facilities and educating their staff on TB. At the time we taught the full class in person and then tested the nurses to ensure they were able to perform the skills correctly,” Dodie said. She took on more and more responsibility, soon becoming a master trainer, or the person who would not only train individuals but also instructors so that they could go out and spread the training information. Since COVID-19, training has also evolved to be done mostly online now except for the in-person validation of skills.

Dodie and her daughter today Dodie and her daughter today

Not all states require such training, but Dodie knows firsthand how important it can be. “I trained a young lady who said she had only once come across anyone with TB and didn’t think it was still a problem. So, I told her about my daughter who is living proof that isn’t true.”

How TB Affects Us Today

TB is caused by the bacterium Mycobacterium tuberculosis. It usually attacks the lungs, but TB bacteria can go after any part of the body. Not everyone infected with tuberculosis becomes sick, so TB is split into two categories:

  1. Latent TB infection or inactive TB and
  2. TB disease

Latent TB infection cannot be spread to others and individuals with latent TB do not have symptoms. While TB disease can be spread to others through the air when a person with active TB disease coughs or talks and others breathe in the bacteria.

Most people think of tuberculosis as a disease that no longer plagues our world, but it isn’t gone. Though it is less common in the U.S. than it was at the turn of the 20th century, the CDC estimates that there are 13 million people in the United States living with inactive TB. Without treatment, 1 in 10 of them will become sick with active TB disease, which is then highly contagious. In 2022, there were over 8,000 cases of TB in the United States, and TB was the second most infectious killer after COVID-19. Today, TB remains the 13th leading cause of death worldwide. There are options for treating latent TB infection to prevent getting TB disease later as well as treatment regimens for active TB disease that take several months. A healthcare provider will decide the appropriate treatment option. Successful completion of treatment is important to cure TB disease and minimize the spread to others. Anyone with either symptoms of TB or a positive TB test result should be evaluated by a healthcare provider for TB disease.

TB elimination in the United States is still the goal and will require efforts to diagnose and treat TB disease and latent TB infection, especially in communities at increased risk. Learn more at Lung.org/tuberculosis.

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