Marvellous Tshuma is “the only white bone who speaks vernacular.” As a person with albinism, growing up in rural Binga, she appreciates the...
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Marvellous Tshuma is “the only white bone who speaks vernacular.”
As a person with albinism, growing up in rural Binga, she appreciates the troubles which her peers endure, daily.Aged 25, she now champions her activism through the Albinism Konnect Program, a part of The Noble Hands where she serves as the National Chairlady.
“The closure of chemo and radiotherapy was a push back to us given that we don't have funding, we are solely relying on individual donations to cover accommodation, medical fees, and transportation of patients to and from Damofalls and even from their rural areas,” said Marvellous.
“This is very personal to me because when I look at how I grew up, I’m moved to soldier on and help others with albinism to endure life better than I did. I was born in Binga and it was tough for me,” Marvellous said, explaining why she became an activist.
Albinism is a rare group of genetic disorders that cause the skin, hair, or eyes to have little or no colour and is associated with vision problems.
Albinism is a rare group of genetic disorders that cause the skin, hair, or eyes to have little or no colour and is associated with vision problems.
In Zimbabwe, living with albinism is a daily ‘curse’. At the last count, Zimbabwe had about 70,000 people with albinism, with the majority not living beyond 50 years mainly due to lack of access to treatment for skin cancer.
A greater number of children drop out of school because they lack access to vision and skincare assistance.
A greater number of children drop out of school because they lack access to vision and skincare assistance.
To compound their problems, during the recent lockdown, the chemotherapy and radiotherapy department at Parirenyatwa Hospital was closed, affecting cancer patients. Only two public hospitals offer cancer treatment in the country.
“We can’t afford private cancer clinics as they are expensive, the doctors we have now are operating pro bono.”
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| Marvellous Tshuma |
Most of those with albinism cannot afford private healthcare and often suffer in silence.
“But their surgeries have no cancer equipment and we rely on public hospitals which are very slow and ill-equipped with sundries and medications,” continued Marvellous.
As the albinism representative, she has taken the burden to elevate the albinism plight through her social media presence. “So much more needs to be done because cancer patients are dying helplessly. Only the rich can afford private clinics.”
The daily chores to assist her peers have an emotional impact.
As the albinism representative, she has taken the burden to elevate the albinism plight through her social media presence. “So much more needs to be done because cancer patients are dying helplessly. Only the rich can afford private clinics.”
The daily chores to assist her peers have an emotional impact.
“There is a toll on me because you could see that the nurses are trying but they have no tools and sundries for the job. I was also getting sick because I had spent three sleepless nights running around as Gladys Marime condition was deteriorating.”
Gladys had a terminal cancer wound on her left cheek. “It’s a very confusing time for the healthcare system really because the other patients with different conditions other than COVID-19 are not being attended, literally being sent to their deaths at home if they can’t afford private hospitals,” said the activist.
Marvellous has boldly advocated for a standalone clinic for people with albinism. “From my perspective as a person with albinism, I would say we need a standalone cancer clinic for people with albinism to treat these cancers when they are still in the initial stage.”
“Sunscreen lotions are a human right for people with albinism and should be given for free like what condoms and contraceptives are being given out because we never chose to be albinos.”
Discrimination aimed at the albinism community must stop, added Marvellous.
Gladys had a terminal cancer wound on her left cheek. “It’s a very confusing time for the healthcare system really because the other patients with different conditions other than COVID-19 are not being attended, literally being sent to their deaths at home if they can’t afford private hospitals,” said the activist.
Marvellous has boldly advocated for a standalone clinic for people with albinism. “From my perspective as a person with albinism, I would say we need a standalone cancer clinic for people with albinism to treat these cancers when they are still in the initial stage.”
“Sunscreen lotions are a human right for people with albinism and should be given for free like what condoms and contraceptives are being given out because we never chose to be albinos.”
Discrimination aimed at the albinism community must stop, added Marvellous.
“I would end discrimination and segregation starting from family members to society. I would put a quota system in all clusters of development in government and society for people with albinism.”
Albinism Konnect Program will be launched on 27 March at the United Methodist Church Harare Inner City Circuit.
Albinism Konnect Program will be launched on 27 March at the United Methodist Church Harare Inner City Circuit.
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