Albinism be like danger spell inside dis Nigerian town
Living with albinism no dey easy, albinos in Africa dey live a terrifying reality.
Dis hereditary metabolic disorder dey characterized by di absence of pigmentation ( melanin) inside di skin, hair, and eyes.
However, e get one striking aspect wey dey follow dis disorder: discrimination.
Di mata bad for di Albinism community inside one local council area for di northcentral Nigerian state of Nasarawa.
Godsave Dauda Madaki dey in severe pain from cancer for im ear.
'I lie for bed in pain for two years witout medical epp'
23-year-old Madaki don dey lie for bed day and night for two years now.
Sadly di boy no get access to medical epp sake of say im poor parents no fit cari am go hospital.
Godsave wey come from Akwanga local goment say di growth begin grow for im ear wen e be five years.
But di mata come worse for 2021 and since den, e dey house waiting for death.
Wen Sarah Dauda bin born her boy pikin, she get high hopes for her pikin.
Even wen dem dem know say e be Albino, she and her husband, Dauda Madaki wit dia farm moni, try to take care of am until wen e reach five years.
Na den dem notice one growth for im ear.
Dem bin born eight pikin dem but five don die remaining Godsave and two odas dem.
'We no get 49 thousand Naira for scan for treatment'
Dis boy mama and papa rush am go Gwagwalada Specialist Hospital but sake of delay for diagonosis, dem no start treatment until di mata come worse.
And afta series of test dem come refer di family to National Hospital, for Abuja.
" I bin go Gwagwalada hospital first but dem delay and ask us to go and come back until di situation come worse-dem come refer us to National Hospital.
"And wen I see doctor, dem ask me to go do scan for 49 thousand naira (about $117.84 US Dollar)
"But my parents no get di moni and we go house and since den, na im I dey house in pain.
"Most times if di pain too much, I go buy pain killer and take," im tok
E explain give say di excruciating pain no dey make am waka well and dat im poor parents don try get herbal drugs for am several times.
But afta im take dey treatment, notin don change.
Living wit Albinism be like danger spell
Godsave no be di only albino wey di suffer for di town inside Nasarawa state.
Tori be say like oda tropical regions, Nasarawa normally get hot weather wey dey affect albinos condition.
Den again, di poverty level amongst pipo living wit albinism for di area no even help matas.
Dis na plus say enof health care facility no dey dedicated to albinos wey dey stay here.
Bashir Wahab, 25 year-old say e don suffer growth for eyes and no get moni to go hospital to treat imself.
E explain give say di pain wey im dey go through dey much and dat im dey take pain relieve day and night.
Wahab further explain give say e bin get growth for im ear and den go hospital wia dem tell am to pay 100 thousand naira (about $240.50 US Dollar) to operate am.
But sake of say im no get moni, e decide to shun di hospital and go meet one herbal man wey give am white powder to rub on di growth.
And e dey lucky di tin heal, im tok.
"Wen I try di powder for di growth for my eye, di pain too much"
"I come decide not to rub am again so as not to spoil my eye" di 25-year-old explain.
Nanret Akoji wey dey down wit skin cancer for her right eyebrow say she dey travel to Abuja every month to access treatment.
Din be due to non availability of chemotherapeutic and radio therapy facilities for Nasarawa state.
Nasarawa be 89.4 kilometres away from Abuja, Nigeria political capital, by bus or by car.
Akoji say di rising costs of treatment and oda tins to take care of her skin don dey pass her power.
She say she bin do surgery early last year for Plateau State, a neighbouring part of northcentral Nigeria.
And dem come refer her to National Hospital Abuja for radio therapy.
"I start to come Abuja from October 2021 and I gatz visit hospital everi month-and I no get any place to stay"
"Transport fare don also go up and so e dey very difficult and expensive to treat cancer" she explain.
How non availability of treatment facility dey affect Nasarawa albino community
Leader of Nasarawa State Association of Persons wit Albinism say dem dey expose dem to cancer infection and oda health challenges dem.
Mr John Maigwa say sake lack of treatment centre for Nasarawa state north central Nigeria be a major headache for albinos there.
E say four albinos dem dey down wit cancer for three years now for di state and and three of dem dey for critical condition.
“We never receive any assistance from organizations or governments.
"Four of my members dey down with skin cancer for three years now with three in critical condition"
"Just like odas wey don die due to lack of means to access treatment, dis ones go fit also die unless goment and well meaning Nigerian epp dem to save dia lives"
"Dem come from poor families and no even fit get three square meals a day talk less of cancer treatment" im yarn.
E say skin care dey very essential for albino pipo but sake of poverty and prolong neglect from di goment many of dem no even fit buy soap to use or oda tins wey fit protect dia bodi.
He appeal to Nasarawa State Government to epp dem and initiate one special scheme wey provide care for persons wit Albinism especially those wey dey poor.
According to Maigwa, ”We dey face two major challenges...
"Di society around us find am difficult to associate wit us, pipo dey see us as ghosts while odas say we be punishment from God".
Wetin be Albinism
Albinism na defect for one of di plenti genes wey dey produce or several genes distribute melanin, di pigment wey di give skin, eyes, and hair dia color.
Di defect na sake of di absence of melanin production or low melanin production.
Types of Albinism
- oculocutaneous albinism (OCA)
- ocular albinism
- Hermansky-Pudlak syndrome
- Chediak-Higashi syndrome
- Griscelli syndrome
Wetin be di symptoms of albinism?
Pipo wit albinism dey get di following symptoms:
- Dia skin, hair, or eyes no dey get normal colour
- Dia skin, hair, or eyes dey dey light pass di way e suppose dey
- Dia skin dey get some patches sake of di absence of colour.
Dos wey get eye problem dey suffer:
- strabismus, or crossed eyes
- photophobia, or sensitivity to light
- nystagmus, or involuntary rapid eye movements
- impaired vision or blindness