August is National Organ Donor Awareness Month, and Hout Bay restaurant owner Massimo Orione is celebrating the tenth anniversary of the bone-marrow transplant that helped him beat leukaemia.
Speaking from his pizza restaurant in the shadow of Skoorsteenkop, Mr Orione says he never loses an opportunity to encourage people to register as organ donors and possibly save a life.
Originally from Piemonte, Italy, where his family raised their own chickens, eggs, vegetables, rabbit and veal for the table, he opened the restaurant in 2009, with his wife, Tracy.
His story began in 2007, at the age of 42, when he was working in France as an information technologist. He was always sweating, his skin was itching, his fingers were swollen and he suffered from gout.
It took some time for doctors to diagnose that he had a rare blood disease polycythaemia vera. His bone marrow was making too many red blood cells, causing it to become very thick, slowing the blood flow.
“I’d have a half litre of blood taken from my veins due to the bone marrow overproducing blood, which was like honey. I also received daily injections of Interferon that works with the immune system to help it find and attack viruses and cancer; and also a light dose of chemotherapy.”
In 2008, he came to South Africa and started making pizzas. Working next to the oven, it didn’t matter about the sweating, he says with a smile.
However, his condition went on to develop into leukaemia and he was told he needed a bone-marrow transplant.
Mr Orione says he was lucky that one of his three sisters was a total match and was able to donate bone-marrow stem cells.
Leaving the restaurant in the hands of a manager, he left for Italy for what was a long process of preparation for the transplant, including being totally isolated to avoid infection. Nowadays it is much quicker and easier, according to Mr Orione.
Stem-cell donation is simple, says Nabiella de Beer, a spokeswoman for DKMS Africa, a non-profit organisation dedicated to the fight against blood cancer and blood disorders. Blood is collected from the donor, the stem cells are separated out and the remaining blood is returned to the donor.
Registering to become a donor is crucial, she says. “It increases the chances of finding a suitable match for patients in need of a stem cell transplant as there is a 1:100 000 chance that a patient will find a match.”
Stem-cell matches, she says, are based on a genetic network and are unique to each person. Therefore a patient is most likely to find a matching donor within their own ethnic group.
“For patients of African descent, there is just a 19% possibility of finding a matching donor while those of European descent have a 75% chance of being matched.”
For the non-profit organisation, it is vital to find donors for all patients. They are currently growing the pool of black, Indian, coloured and Asian donors. From the inception of their registry in 2018, they have recruited 59 312 donors in South Africa.
Last year, they recruited 21 929 people with 51% of them being of non-European descent, the highest ever, and 11 080 of them are under the age of 31. So far this year, 60% of their donors are of non-European descent.
Regarding Mr Orione finding a familial match, Ms De Beer says research shows that only 30% of patients find matches within their family, with 70% relying on unrelated matches.
The provincial health department says people can be an organ / tissue donor if they are under the age 70, in good health and are clear of any predefined chronic diseases that might cause further health complications for the recipient.
Live donations, such as a kidney, are often done between family members, because the blood groups and tissue types are more compatible to ensure a high success rate, says Ms De Beer.
The national health department says South Africa is a world leader in the field of organ transplantation. However, while the number of patients waiting for transplants continues to increase the serious shortage of potential donors remains a great concern.
When Mr Orione’s transplant was over he celebrated with a party and raised R150 000 for the Domestic Animal Rescue Group (Darg) and the Sunflower Fund, which is now DKMS Africa. Mr Orione still donates funds to nine charities and organisations.
On Tuesday August 29, the Orione’s will fly to America for a long holiday in celebration of Mr Orione’s milestone.
You can sign up as a potential donor at dkms-africa.org. Registering involves completing a health questionnaire and providing a small sample through a cheek swab. You can also register as an organ donor with the Organ Donor Foundation toll-free line at 0800 22 66 11.
