Musa Makina
SIPHIWE Nkomo, 16 smiles ungenerously as her peers yell and yowl in clear exhilaration. Its break time at Eveline Girls High school which is seated acutely at the edge of the second largest city’s Central Business District.
The subject that is keeping the visibly naïve girls on the edge, is their explorations and experiences in sexual relations. Among the group of six girls, almost each one of them has a story to tell, but not for Siphiwe, as she feels out of place and lonely.
She obviously has a story to tell but it demands a lot of explanations. Suddenly, she feels cursed and she bolts out of the group leaving her peers perplexed. She finds herself in the resting room where she cannot help it but sob in agony.
The condition forces her to spend at least 45 minutes daily on the toilet seat struggling to relieve herself as she was born without an anus (anorectal malformations). Besides that the condition has seen her enduring the toughest moments of her life of soiling herself. To make matters worse, during her formative days at school she became a laughing stock and had to endure the stigma, while at home some considered her a curse in the family.
Unlike her peers, her condition has made her resent any advances by any male counterpart. She is clearly suffering from an inferiority complex.
“As I grew up I got to appreciate my condition, through various counselling and support groups, though it has been tough in terms of financial costs as most of the medication has to be imported,” she recounted.
Siphiwe’s case is however, far from being an isolated one. Her situation is mirrored across the country and in other Southern African Development Community (SADC) countries where people with rare diseases are suffering in silence.
Although there are no official statistics on the total number of rare disease patients in Zimbabwe, according to Rare Diseases and Disabilities Africa (RaDDA) Foundation approximately seven percent of people are living with rare diseases in the country.
“Approximately seven percent of our population are people born with rare diseases. In other words, for every 100 people in Zimbabwe, seven people were born with rare disease. But because these diseases are not properly documented there is no proper registry in Zimbabwe.
“When you visit our local hospitals, they will tell you of an imaginable number of people with rare congenital diseases,” RaDDa Foundation director Tino Mudarikwa said.
Generally, rare diseases are life threatening or chronically incapacitating diseases which are of such low prevalence that special efforts are needed to address them.
Research shows that many rare diseases onset during childhood and continue throughout life, although some do not become evident until adulthood.
Around 80% of rare diseases have a known genetic association. Most cannot be prevented, are complex with multi system dysfunction, disabling, incurable and have no effective treatment.
European studies show that 50% of rare diseases are associated with motor, sensory or intellectual impairment, 30% of rare diseases lead to an incapacity which reduces self-sufficiency and 35% of deaths that occur before the age of one year can be attributed to rare diseases.
With a day in February every year being recognised as the Rare Disease Day across the globe, in Zimbabwe, it appears to have no meaning at all as it has always passed silently.
March 3 is also another day that was set annually to commemorate the World Birth Defects.
However, with the advent of Covid-19 pandemic, the rare diseases patients who felt they have largely been ignored by the government, say their lives are at a bigger risk
“Rare diseases only affect a small number of people unlike HIV and Aids, cancer, cholera and malaria. More resources and media exposure is given to these diseases that affect the masses and often rare diseases like Lupus are often ignored.
“It’s a fact that Covid-19 has a huge impact on us as compared to our normal counterparts. Besides having to deal with the burden of our underlying conditions, we now have coronavirus on our face.
“No one really cares to protect or even talk about us. We need medication, we need constant visits to medical practitioners, we need all sorts of assistance and with this lockdown our suffering will always remain an untold story,” said a 27 year Lupus patient who preferred to be called by her first name Rodney.
Mudarikwa who for the past two years has been fighting a lone battle to have the congenital diseases recognised in the country said his organisation endeavours to make a positive difference in all persons with rare diseases.
”Our mandate is to uplift the marginalised. We are prioritising a registry in Zimbabwe, we work on support groups. As an organisation what we envision to do is to get a proper diagnosis of rare disease patients. We want to demystify congenital rare diseases and disabilities deemed sensitive to openly talk about.
Research reveals that over 350 million people are affected by rare diseases across the globe.
According to South Africa rare.org website there are approximately 7000 different rare diseases that exist today and 80% of the 7000 diseases are genetic in order, and 50% appear within the first year of life.
It says only 5% of all rare conditions have treatment available, which leaves 95% of patients only able to access supportive care for improved quality of life not treatment.
“Most African countries under report the current statistics and data in terms of rare disease contribution to the under-5 mortality rate, because there is no registry or records to support. At present there are huge gaps in the evidence related to rare diseases in Zimbabwe and Africa at large,” the website notes.
Mudarikwa who has also had a painful and sad story of his rare disease, said they were not asking for sympathy but needed the government to have a register on the number of their patients.
“We are appealing to the government to have a register for all persons with rare diseases. We understand that the government has its hands full with Covid-19 patients but remember everyone has a right to health, we also deserve a right to health, access to medication and access to medical check-ups.
The Government should come up with a policy that caters for people with rare conditions,” he said.
“Baseline data and information on the rare disease landscape is required so as to systematically assess the health care experiences of Zimbabweans living with rare diseases and their impact on the entire health care system.
“The high presence of communicable diseases such as malaria, HIV and AIDS consume most of government resources and limits access for non-communicable diseases. Hence, there is a need to raise awareness on these invisible or non-communicable diseases so that people with rare diseases do not suffer in silence,” Mudarikwa said.
Parliamentary Portfolio Committee on Health chair Ruth Labode told Daily News on Sunday that there was a need for the Ministry of Health to recognise the rare diseases “as problem” in order to address the challenges faced by this community.
Founded in 2018, RaDDa has to date partnered with CBOs, corporate, individuals, other development partners and the Zimbabwe and South African government in funding different projects that meet the needs of rare diseases patients and PWD in rural areas.
