Meet Megan Diener, a vivacious, courageous and resilient young woman who was born with a very rare genetic disease, Diamond-Blackfan anaemia (DBA). DBA affects approximately 5 to 7 per 1 million new-born babies worldwide. The disease affects the bone marrow and prevents it from producing enough red blood cells (red blood cells are needed to carry oxygen throughout the body).
At the age of two, Megan’s parents noticed something was not quite right. She was extremely pale, suffered from fatigue, had a high heart rate and was out of breath. A bone marrow biopsy was done at Red Cross War Memorial Children’s Hospital and Megan was diagnosed with DBA.
A year later it was discovered that Megan had a hole in her heart, which is a symptom of DBA. She underwent heart surgery to fix it and was subsequently put on a very high dose of cortisone. Megan continued taking the cortisone, at one stage up to 18 tablets a day, until the age of 11 when the medication stopped working. She then had to start receiving red blood cell transfusions every 3 to 4 weeks.
Megan is now 36 and continues to receive two units of red blood cells every month. Six months ago, she had a port fitted to her upper chest because after so many years of receiving transfusions, her veins were no longer able to cope with the needles. Each transfusion takes around four hours and that excludes the two to three hours for the set up and flushing out the port afterwards.
When Megan was diagnosed with DBA her parents were told that she would not live long enough to see her 21st birthday. Megan has not only surpassed their expectations but lives a full and active life. She studied journalism at Varsity College and has been working full time at Exclusive books in Constantia Village since 2022. During COVID-19, Megan started running and has already completed 5km races. She is training towards her first 10km race which she hopes to complete in the new year.
Family and friends regularly donate for Megan and she is so grateful to all the donors who have not only helped to save her life but the lives of so many other patients in the Western Cape. Megan’s positive outlook, combined with the selflessness of the blood donors who continue to donate regularly, will without a doubt play a crucial role in helping her to achieve her goals and continue to live a full productive life.
