To honour World Blood Cancer Day, an international donor registry organisation unveiled facilities that will bring “normalcy” to teenage blood cancer patients at the Inkosi Albert Luthuli Central Hospital.
DKMS Africa — an African footprint of German non-profit organisation DKMS, which recruits stem cell donors for blood cancer patients — partnered with the Durban-based hospital to launch the “Hope Hub”.
The organisation has footprints in six other countries and more than 11-million donors registered with them worldwide.
Erna West, country manager at DKMS Africa, said the area had been set aside for adolescent patients to spend weeks while getting treatment at hospital to catch up and “just be teenagers”.
“Unfortunately teenagers are often overlooked in a setting like this because we focus on the small children and adults. These teenagers are sharing wards with adults so we have recreated a space where teenagers can hang out and share their experiences with each other and just be some kind of normal teenagers,” said West.
The facility includes a piano space, reading space with a number of books, TVs and PlayStation 4, as well as facilities for other ball games.
“We want to keep the spirits alive. I think we will learn a lot from this, and we will be able to improve our efforts,” added West.
The longest a kid has been here while undergoing transplant was 120 days without going home. We were afraid to let her go home because she came from a very poor socioeconomic background
— Dr Sharlene Parasnath, head of the clinical unit at the department of clinical hematology in the hospital
“Their treatments are long and in this space they are mostly isolated from their normal life. Some of the patients don't get that morale and emotional support because their parents are not able to visit as often as they'd love to.”
Dr Sharlene Parasnath, head of the clinical unit at the department of clinical hematology in the hospital, said her unit treats disorders of the blood and bone marrow syndromes, including leukaemia, in patients older than 12.
Their patients can be planted with a donor, either a sibling or unrelated donor who is a match, to cure them.
Their relationship with DKMS came about when they were looking for blood stem donors outside but didn’t have enough people on their registry.
“Because of the types of dynamics that we have among our population, not every child has siblings from the same parents, so oftentimes siblings may not match them as a donor. We needed to look outside the family for a donor, but in SA we didn’t have many people on the bone marrow registry so DKMS has been doing campaigns to try to get more people to donate,” she said.
Parasnath said some kids end up having to repeat grades or leaving school altogether because of the amount of time they are forced to spend at the hospital, partly to protect their “suppressed immune system” from possibly contracting other infections in the school environment.
“The longest a kid has been here while undergoing transplant was 120 days without going home. We were afraid to let her go home because she came from a very poor socioeconomic background so she went home and got sick because she didn’t have basic services that ensure good hygiene like running water. So we decided to keep her in the ward for almost four months until she was at a stage where she didn’t need any sort of extreme measures,” she said.
“So imagine the investment of millions of rand to treat a child only for them to go back home and pick up a disease.”
She added the disease was already taking a lot away from the patients, especially teenagers who are still trying to find themselves and develop their personalities.
“This will help get their minds off the disease and make their lives a little more pleasant because we may not be able to cure every single one of them and this might probably be the last place they will be, so it’s just to give them that quality of life and happiness,” she said.
Parasnath said the unit, like most in the state health system, needs more resources and personnel but doesn’t have enough funds.
She said they can do with access to newer therapies that are changing the lives of the people in other countries.
“For a lot of the blood disorders that we treat there’s a lot of new treatments that are very good being developed all the time, but they come at a high cost. Obviously a hospital like this is treating a whole lot of other conditions as well, so we can’t have all the budget going to blood disorders,” she said.
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