As a child I remember a campaign the local Day Hospital ran in our community to ensure tuberculosis (TB) patients took their medication religiously. We had a few people come to our house in the early morning hours or after work to take their medication. Clinic Sisters did house-calls to follow up on their patients.
I remember admiring my dad for opening up our house to these patients. Sometimes he would even go as far as visiting patients at their homes and I recall many other community members in Ocean View doing the same thing. Fighting TB was everyone’s business!
In South Africa we lose approximately 50 000 people per annum to TB, and those diagnosed with Multi Drug Resistant (MDR) and Extensively Drug Resistant (XDR) TB are at a severe risk of developing permanent hearing loss due to the ototoxicity* in the aminoglycoside drugs in TB treatment.
Today, my dad and I were privileged to listen to two guest speakers share their journey of surviving MDR and XDR TB at the AHLAD brunch.
- Dr. Dalene von Delft, diagnosed with MDR-TB on Christmas Eve, shared her story of surviving this harrowing disease. “Will I ever be able to hear as a clinician through a stethoscope…?” She was one of four MDR-TB patients who participated in the research on TB prevention trial drugs, bedaquiline. She co-founded TB Proof, creating awareness of and protection against occupational and nosocomial TB transmission, destigmatizing and prioritizing occupational TB and mobilising national and global resources through patient advocacy to help prevent shortcomings in prevention and treatment strategies. Dr. Von Delft and her husband shares their story on the below video.
- Today, Phumeza Tisile also shared her story. Diagnosed with XDR-TB at the young age of 23 in 2013. “Although I survived, a lot of people I met did not”. She suffered many side effects including permanent deafness, broken rib and a collapsed lung! She is a survivor! After a big fundraising campaign she received her cochlear implant on 23rd February and was switched-on eight days ago, on the 20th of March. “I will say it is a miracle”. She shares her journey with the Human Spirit Project, “Hear no Evil”.
TB is caused by bacteria (mycobacterium tuberculosis) that most often affect the lungs. TB is curable and preventable. It is an airborne disease – when people with TB cough, sneeze or spit, they propel TB germs into the air.
TB is a community disease, it is everyone’s business, anyone can become infected with TB. A person infected with TB can transmit the disease to 10 -15 others.
* Ototoxic: to have a toxic effect on the ear or its nerve supply.