Blood-disease survivor educates about rare diseases
After living in constant risk of falling terribly ill, she was diagnosed and it was clear that she needed a bone marrow transplant since bone marrow is the tissue in the body where blood cells are produced.
Nonhlanhla ‘Noni’ Mtshali, a nurse from Florida, has not only dedicated her life to treating patients, she has also started using her time in service to educate many about rare diseases.
Noni, who works for Lancet Laboratories, felt the need to empower others after surviving a blood disease, which doctors took a while to diagnose.
Almost a decade ago she was diagnosed with Aplastic anaemia, an autoimmune disease that meant her body was failing to produce a sufficient number of blood cells. It all started in 2012 when she fell ill and was admitted to hospital. Noni discovered that her haemoglobin level was abnormal.
For women, a normal haemoglobin level, which measures the number of red blood cells in the body, is between 12,0 and 15,5. However Noni’s average was 4.
She underwent a number of blood transfusions and procedures as doctors tried to figure out what caused her condition.
After living in constant risk of falling terribly ill, she was diagnosed and it was clear that she needed a bone marrow transplant since bone marrow is the tissue in the body where blood cells are produced. The transplant would replace her diseased marrow with a donor’s healthy marrow so her body could begin producing normal blood. But in order to get the transplant, Noni needed to find a donor with a 100 per cent bone marrow match – a chance of only 1 in 100 000. She needed a miracle.
Her doctor contacted the South African Bone Marrow Registry (SABMR), the organisation responsible for donor search for South African patients in need of a bone marrow transplant, and the search for Noni’s donor began.
Incredibly, the SABMR located a match for Noni in Brazil only one month later. Soon thereafter, the SABMR coordinated the donation in Brazil, couriered the stem cells to South Africa, and Noni received her transplant. Within a year of her diagnosis, Noni was cured of her disease.
Since words could not express her gratitude, the passionate nurse who got married soon after she was in good health, started raising awareness and dispelling misconceptions about transplants. She also chose to be a voice because she felt South Africans lacked knowledge about bone marrow transplants.
“There are so many people who ignore the issue or feel it doesn’t affect them or their family, especially the older generation. Sadly, we aren’t given enough of a platform to talk about it with the public and say, ‘This is what’s happening, and it’s really serious’,” she explained.
In a bid to raise awareness constantly, Noni often brings her transplant experience into conversations with her patients at work.
The SABMR has appealed to individuals to become someone’s miracle like in Noni’s case, and help save a life. Healthy donors should be between 16 and 45 to register.
For more information, check out the SABMR’s website at www.sabmr.co.za, call 021 447 8638, or email donors@sabmr.co.za.
