BY BRIDGET MABANDA
COVID-19-INDUCED lockdown has not only affected the operations of Xeroderma Pigmentosum Family Support (XPFS), a non-governmental organisation that looks after the lives of those diagnosed with ultra-violet conditions, but has also crippled the lives of her beneficiaries.
Pauline Mapuvire , the founder and funder of the organisation, says the drying up of revenue streams triggered by the COVID-19 pandemic has severely threatened her project, leaving her patients with the skin disease more vulnerable.
“XPFS is new and I have been funding my organisation through a restaurant and events company. These kinds of businesses are closed due to COVID-19 meaning no money is being generated,” Mapuvire said.
Xeroderma Pigmentosum (XP) is a condition that renders the body unable to repair damage caused by ultra-violet radiation, leaving the skin too sensitive to sunlight.
In absence of sun protection, XP patients’ skin ages, becoming dry, rough and atrophic, according to an article in the Oprhanet Journal of Rare Diseases.
Mapuvire’s organisation started operating informally in Zimbabwe in 2017 and was registered in 2019, and has been assisting the beneficiaries out of her pocket when she was hit by a series of lockdowns last year to curb the rise in COVID-19 cases.
XPFS was just recovering from the previous lockdown when Vice-President and Health minister Constantino Chiwenga declared a 30-day lockdown after the country was hit by a new wave of the virus.
Chiwenga banned weddings, opening of restaurants, bars and churches as part of the 30-day measure to stall the virus.
But for Mapuvire, the lockdown restrictions ignore the lives of Xeroderma Pigmentosum patients as the closure of her restaurant means she can no longer support them.
Apart from the assistance from the organisation and its funders, very little is being done by government’s Health ministry to provide support to victims.
On November 26 last year, the Health ministry appealed to hospitals to work with the XPFS Zimbabwe to support the children with Xeroderma Pigmentosum.
“I urge hospitals, where possible, if they can also chip in and allow XPFS to use a selected room as XP registration at their premises,” said John Mangwiro, the Health deputy minister in a speech read by Wenceslus Nyamayaro.
However, due to COVID-19, nothing has been done so far concerning XP patients whose condition requires regular check-ups.
Fatima Muzize, an XP caregiver, said XP patients use expensive, specialised creams beyond the reach of many.
“50ml of Vaseline Dermatology Formula lotion is going for US$20. Skin care doctors are charging exorbitant fees for check-up,” she said, adding that some of the creams are not found in Zimbabwe.
In extreme cases, Xeroderma Pigmentosum results in skin cancers, blindness, and neurological disorders.
Between 2019 and 2020, XPFS recorded a total of 88 cases and seven children have succumbed to the condition.
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