According to The Global Cancer Observatory (GCO), a South African is diagnosed with a blood disorder every five minutes, and while the number of patients is constantly rising, there are only under 77,000 registered donors in the country.
Alana James, CEO of the Sunflower Fund, says that Sunflower Day, which will be celebrated on 13 November this year in light of Covid-19, has become a beacon of hope to the many who suffer from blood disorders. “This is because the funds from the tope sales, which will be on sale from 1 October 2020, assists in ensuring that The Sunflower Fund can continue the life-saving work they do – recruiting donors and assisting patients who require financial support with getting to transplant.”
However, the statistics around blood disorders versus the number of donors in the country is shocking, says James. “To further complicate matters, a patient’s best chance of finding a matching donor is from someone within the same ethnic or cultural group as them.”
Unfortunately, she says patients of colour are at a disadvantage due to the lack of Black, Coloured and Indian population groups in the global donor database. “One such example is six-year-old Azile Ngubane who started experiencing joint pain and weight loss which after a series of tests resulted in a diagnosis of Lymphoblastic Leukaemia. Azile has no siblings and is currently still desperately in search of a match to save her life.”
She points out that finding a matching donor comes down to genetics. “There is a common misconception that a genetic match can only exist within the family; however, there is only a 25% chance that a sibling could be a match. The remaining 75% chance is based on finding an unrelated matching donor and there is only a 1:100,000 chance of a patient finding a match, making the need for donors crucial.”
Blood disorders are complex and range from more frequently heard of blood cancers like Leukaemia to Aplastic Anaemia, Sickle Cell disease, bone marrow failure, red, white and autoimmune blood cell illness, explains James. “They do not discriminate against certain cultures or ethnicities, genders or societal status, and are not all hereditary; so anyone can be diagnosed at any age.”
“The many misapprehensions around blood disorders and stem cell donations are a major challenge for us as an organisation; making it so much more difficult to secure the much-needed donors,” says James. “There tends to be confusion between blood donation, organ donation and stem cell donation – these are completely different databases. There are also many cultural and religious uncertainties that people think are cause for them not to register.”
However, in order to assist as many patients diagnosed with Leukaemia and other blood disorders as possible with finding their life-saving match, James calls on more South African’s to take action in one of the following ways:
Become a donor: Most people worry that the procedure to register or donate stem cells will be painful. Registering involves three swabs of DNA collected from the inside of your mouth and cheeks and can be done from the comfort of your home. When you are a match for a patient, donating is non-invasive, and doesn’t require an operation, anaesthetic or incisions. While many people think that once they become a donor they will be asked to donate stem cells more than once, you will only donate stem cells once in your life when you are a match for a patient.
Becoming a donor is completely free as there are no costs involved at any point in the process.
If you are between the ages of 18 and 55 years, with a BMI of less than 40 and a consistent bodyweight of 50kg, you could be eligible to become a stem cell donor. For more information or to register, go to www.sunflowerfund.org or call 0800121082.
Buy a tope: The Sunflower Fund’s annual Sunflower Day campaign will be commemorated on Friday, 13 November this year. The Tube of Hope (Tope) will go on sale from 1 October 2020, and will retail for R30 at Pick n Pay stores nationwide, selected independent pharmacies and online at Zando.
All proceeds from the sales of the product enable the organisation to recruit blood stem cell donors offering the hope of a cure for patients diagnosed with life-threatening blood diseases and contributes to the growth of the patient assistance fund.
