Updated 30 March 2017

New voice for SA's chronic myeloid leukaemia patients

The Igazi Foundation has established SA's first patient support and advocacy group for people suffering from Chronic Myeloid Leukaemia (CML), a very rare form of cancer.

Eastern Cape-based haematology NGO, the Igazi Foundation, has announced the establishment of the first South African patient support and advocacy group for people suffering from Chronic Myeloid Leukaemia (CML), a very rare form of cancer. Called "CML SA", the group will offer up-to-date information, emotional support and advocacy on behalf of all CML patients in South Africa.

CML is a cancer of the blood-forming organs that affects ‘myeloid’ or white blood cells. “Patients often feel isolated and anxious because CML is one of the lesser-known cancers and receives very little attention from the media and public, making it considerably harder to find reliable information and support,” explains CML patient and founding member of CML SA, Trevor Steyn.

“It’s a situation that really needs addressing, especially given that there are treatments available that can help sufferers lead healthy, normal lives. We just need to make sure they can access the treatment, information and peer group support that will inform and motivate them to stay compliant.”

As well as supporting individual sufferers, CML SA will be advancing the needs of CML patients as a whole. “The CML patient population is small and, as a result, sufferers can find themselves without the necessary numbers to get their issues and needs addressed,” confirms Steyn. “CML SA will seek to provide the collective voice required to establish CML as part of the South African landscape and ensure patients have access to the life-saving treatment they need.”

A spontaneous genetic mutation

Dr Neil Littleton, Head of Haematology at the Port Elizabeth Hospital Complex (PEHC), verifies that CML represents 10-15% of all leukaemias and affects 1-2 people per 100 000 each year worldwide. “Unfortunately, we don’t have data for South Africa at the minute, but I suspect our figures might even be higher than the international prevalence, based on what I have personally observed and exchanges I’ve had with other treating clinicians,” he maintains.

According to Dr Littleton, the causes of CML remain unknown. “We don’t know for sure what causes CML and the only known risk factor is exposure to high doses of radiation,” he confirms. “The presence of the Philadelphia chromosome in almost 95% of cases suggests that there is definitely a genetic component, but the disease doesn’t appear to be inherited. It is more like a spontaneous mutation in your genes.”

CML is also more likely to develop the older you get. “It’s a disease of the elderly,” observes Dr Littleton. “Youngsters do get CML, but it’s quite rare and the incidence increases with age, especially in the fifth, sixth and seventh decades of life.”

Education and compliance critical

Dr Littleton also agrees with Trevor Steyn’s view that the new treatments have made patient education and compliance critical concerns. “The new treatments are amazing and have ensured CML is no longer the death sentence it once was,” he affirms, “but it is still a disease and patients need to understand that they must take their pills every day, for the rest of their lives. Patients can’t miss a day, even when they are feeling better and symptom free.”

It’s a theme that Steyn emphasises. “Physicians and healthcare professionals may advise and prescribe treatments, but patients have to adhere to these,” he explains. “It’s a question of taking responsibility for, and ownership of, their treatment. CML SA will be able to help, providing up-to-date information and support, but patients need to ask questions, communicate their expectations and fears, and learn about their illness.”

CML SA will be launching its new website soon, but patients and interested parties are welcome to contact Trevor Steyn on: 082 782 5358 or Cathy Scheepers on: 082 940 6397 directly in the meantime.

(CML SA press release)

(Photo of orange leukaemia ribbon from Shutterstock)

- (Health24, January 2013)

Read more:

CML: a journey of hope
New leukaemia therapies offer hope
Chronic Myeloid Leukaemia: the facts
Cancer: know your rights and responsibilities


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