Khayr's Story

Khayr's story

Khayr was tested for TB as part of the college application process. His doctor told him he had inactive TB.

TB germs can live in the body without making you sick. This is called inactive TB, or latent TB infection. People with inactive TB are infected with TB germs, but they do not have active TB disease. They do not feel sick, do not have symptoms of TB disease, and cannot spread TB to others.

Without treatment, people with inactive TB can develop active TB disease at any time and become sick. People with active TB disease may also be able to spread the germs to people they spend time with every day.

Khayr was prescribed treatment for inactive TB to prevent the development of active TB disease. But he did not complete the full treatment. A few years later, he began experiencing symptoms of active TB disease.

"While I was going to college, I noticed that I, you know, had started losing a lot of weight and then I started getting night sweats. They weren't bad at first, but, you know, they became more and more. I'd wake up, you know, completely soaked," Khayr recalls.

Diagnosis

Khayr's symptoms continued to worsen. Eventually he was diagnosed with active TB disease and began treatment.

"I think the biggest misconception I had about TB when I was diagnosed with it, when I had the latent infection [inactive TB] and then even when I was diagnosed the second time with the active TB, was that it wasn't a serious disease. You know, I felt like TB had been cured or maybe if not cured I knew that if you took medication that, you know, it would go away. I did not realize the severity of TB or even the different types of TB," says Khayr.

But even after starting treatment for active TB disease he didn't feel any better. He knew something was not right. After some additional tests and another chest x-ray, his doctor had some disappointing news.

"He said 'listen, you have something called drug-resistant TB. It's when the first-line drugs that everybody takes are not enough to cure the disease. So, we're going to add some second-line drugs,' and he kind of went through the gambit of what they were, some of the effects that we might have," says Khayr.

Treatment

People with drug-resistant TB disease must be treated with special medicines. Treatment may take longer, and the medicines may cause more side effects. In Khayr's case, treatment would take 18 to 24 months. He also needed to isolate again until he was no longer infectious.

"I'd say the hardest part about the treatment is the isolation. Not being able to go through the experience of, you know, being sick while, you know, being with your friends, being with your family and just to be in society at large, " says Khayr.

Khayr's message

Reflecting on the challenges of such a long time on medications and in isolation, Khayr hopes his story can encourage people with inactive TB to complete treatment, to prevent the development of active TB disease.

"If there's one thing I could change about my treatment personally it would be to go back in time to when I was 19 and I was diagnosed with latent TB...it would have saved me a lot of grief in the future. It would have saved me, you know, seven months in isolation. So, I think stopping TB at that initial stage, when it's latent and when you're not infectious, I think is something that we need to educate more people about" says Khayr.

If you are a TB patient, survivor, or family member in need of support, We Are TB is a community of TB survivors, people being treated for TB, and their family members who are committed to the common goal of eliminating TB.