WHO - World Health Organization Regional Office for Europe

16/08/2024 | News release | Distributed by Public on 16/08/2024 20:30

“It felt like the sky had fallen in on me! Now, I’m grateful for the free treatment and the doctors who guided me.”

Gulnora was devastated to learn she had multidrug-resistant tuberculosis (MDR-TB), but with the help of her doctors, family and the most up-to-date treatment, she has made a full recovery.

A diagnosis of MDR-TB was not the present that 38-year-old Gulnora* had been hoping for on her birthday in 2022. A busy mother of 3 children in Uzbekistan, she had worked hard to become a fully qualified teacher juggling family, work and evening classes at university. She had been feeling tired and unwell, but thought her heavy workload and many responsibilities were enough to explain her state of constant exhaustion.

However, her health continued to decline, and she started to have difficulty breathing. She forced herself to find time for a doctor's appointment and underwent some tests, receiving a shocking diagnosis: Gulnora was not only battling TB, but facing a hard-to-treat form of the disease that is resistant to the main drugs used for treatment.

"Initially, I was in disbelief and went through numerous tests to confirm it. My case was not infectious, but it still felt like the sky had fallen on me," she says. "My family was shocked - we lead a healthy lifestyle, it was unexpected - but my husband and family were very understanding. They encouraged me to follow the treatment plan strictly. My mother-in-law, a doctor herself, was a great support, reassuring me that proper treatment would help me recover."

Latest treatment regimen

A few years earlier, Gulnora would probably have faced a 2-year treatment regimen involving a long stay in hospital, almost 15 000 pills and hundreds of injections with difficult side effects. Fortunately, she was able to access the latest treatment regimen with a quarter of the number of pills, fewer side effects, no injections, minimal hospital time and, most importantly of all, a good chance of complete recovery.

Gulnora immediately began treatment. Even though the regimen was shorter and easier to tolerate, it was still tough. She was well aware that the stakes were high and her commitment was crucial - not taking the medicine could mean extending treatment and more pills.

"I had to take pills daily for 9 months, which was daunting. Missing even 2 days could make the disease harder to treat."

She adds, "My doctors encouraged me, and 6 months into the treatment, I was improving. When I was told that I only had a few more months, then I would be cured, it gave me the strength I needed to finish the course successfully."

Discipline and commitment to recovery

The latest treatment regimens for TB can generally be given on an outpatient basis, but sometimes a stay in hospital is needed. Gulnora was admitted to hospital for 3 months to monitor how she was adjusting to the medication. She used the time to learn about her diagnosis and the medication she was taking, and became convinced of the importance of a positive attitude.

Leaving the hospital was also an adjustment, as it required discipline to take the pills at home. After seeing others quit their treatment and return to hospital, Gulnora was determined that it would not happen to her.

"Some patients left the hospital after a few months, feeling well enough, but then they stopped their treatment and had to return. I set a goal for myself to never come back to that hospital, no matter how many pills I had to take. I was committed to my recovery. I firmly believe that success in treatment depends on the person's determination and willingness to persevere."

She explains, "I saw others who had given up, but I focused on following the treatment to the letter and took every pill as prescribed. The doctors kept a close watch on the TB patients. It's crucial to follow their advice, to stay disciplined and responsible. No matter how long the treatment takes, we must not give up. Support from my family and a positive mindset helped me get through it. Now, I'm grateful for the free treatment and the doctors who guided me."

Dedicated health-care professionals and innovative treatments

Dr Mukhiddin Akiev, Deputy Director of the Center for Phthisiology and Pulmonology in Tashkent, cared for Gulnora throughout her illness. He has been working on TB since 2012.

"I used to see patients suffer from having to get injections every day for such a long period," he explains. "I always thought - can there be other options that would make them suffer less? I have strived to offer my patients newer, more effective and modern methods of treatment. I am very happy to see the effectiveness of these treatments. When each patient recovers and says thank you, I feel joy for them. And as a doctor, I am proud to help them heal."

Dr Askar Yedilbayev is WHO/Europe's Regional Adviser on TB and leads a team that, in collaboration with the WHO Country Office in Uzbekistan and the country's health authorities, introduced the 9-month modified fully oral treatment regimen that Gulnora received.

He points out, "Gulnora may not have felt fortunate facing such a diagnosis, but actually her care followed the latest recommendations for the WHO European Region. Previously she could have spent up to 2 years in hospital and had to take many more pills. Now, treatment of drug-resistant TB with the new medicines recommended by WHO is more effective, safer and much shorter. This has led to greatly improved treatment success and improvements in the quality of people's lives."

Dr Asheena Khalakdina, WHO Representative in Uzbekistan, adds, "Gulnora was also in a fortunate situation being in Uzbekistan, where an accurate laboratory diagnosis was possible. Also, the latest medicines for treatment are available and free at the point of care. The Government of Uzbekistan has shown the highest level of political commitment, and this has made the uptake of the latest developments and recommendations much faster. In combination, all these efforts will lead to success, and ultimately to Uzbekistan being free of TB."

Gulnora is once again living her life to the fullest. She urges others to be attentive to signs of ill health. "Trust your body and get checked early if you feel something is off," she advises. "Don't delay medical visits, early detection is crucial - your health and family are worth it."

*This name has been changed to protect anonymity.