Begimay survived MDR-TB and uses her experience to fight TB

Begimay is a young mother of three children who recovered from multi-drug resistant tuberculosis (MDR-TB). Her difficult and long battle against tuberculosis (TB) now inspires and motivates her commitment to create a support system for people with TB. She works as the data operator for KNCV in Kyrgyzstan for the Dream Fund project. She also started a local NGO under the KNCV umbrella. Through this local NGO she provides patient support, for example through in-person motivating MDR-patients to stay adherent to their treatment.

The Dream Fund project -funded by the Dutch Postcode Lottery– aims to set a new standard for the diagnosis of infectious diseases and antimicrobial drug resistance (AMR) by ensuring access for all patients to a novel technology to test for all infectious diseases; nanopore sequencing using MinION devices, by Oxford Nanopore Technologies.

Recently, when Ineke Spruijt and Norma Madden visited Kyrgyzstan to provide a training for the Dream Fund project, they met Begimay. Begimay was eager to learn and contribute to the project. During one of the coffee breaks of the training, Ineke and Norma got to know Begimay and learned about her life, her strength, her power, and her motivation for the fight against TB. A story that brought them both to tears. A story that shows us what real resilience, strength, and determination is. 

Begimay developed MDR-TB in 2008, when she was only 14 years old. She was infected by her mother, who sadly did not survive the disease and passed away. After her treatment, Begimay developed MDR-TB a second time in 2009, for which she received intensive treatment for almost two years. The TB broke her heart and soul, as she found herself in a dark and empty space. She felt depressed and lost the will and strength to live. During this period, it was not just the TB disease and treatment that made this time difficult for her. She experienced a lot of discrimination and stigmatization from her friends and classmates, who told her to stay away from them and did not want any contact because she was “dangerous”.

Luckily Begimay had her loving father, who was – and still is – her greatest friend, motivator, and supporter. He visited her in the hospital, motivated her to take the medicines, read books to her, and went to the gym with her. Together with her own strength, he pulled her through the treatment to the point that she was finally cured. 

Today, with a supporting father and husband, Begimay has turned her traumatic experience into strength and motivation to support other TB patients in adhering and completing their treatment, by providing psycho-social support. In the past six years, Begimay has contributed to many projects through KNCV Kyrgyzstan with continuous support from her colleagues.

Begimay’s dream: “To develop a support system for the women and children with TB, to get all persons with TB on treatment, and create an environment for patients that is free of stigma and discrimination”.

KNCV has been fighting TB since its establishment in 1903. Over the past 120 years, the organization has acquired indispensable knowledge and experience in the field of effective TB prevention and care, resulting in pre-elimination in the Netherlands and significant contributions to global evidence generation, policy development and TB program implementation worldwide.

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