Muscular dystrophy: ‘Me and my sista dey suffer from dis condition’

Marvelous and Nnenna

BBC

27 years old Marvelous Cyril and im younger sista Nnenna Cyril dey live with muscular dystrophy.

Na condition wey dey weaken di muscles wey e don dey struggle wit for more dan 15 years now.

Marvelous tell BBC Pidgin how di sickness start around 2002 before im finally stop to dey waka and no come fit use im hands or legs again for 2007.

“Dis my condition start wen I be dat kain four or five years old for 2002. I notice say my body come dey weak, e come dey affect my muscles.” E tok.

Marvelous and Nnenna

BBC
Muscular dystrophy dey affect pesin muscles and prevent dem from functioning

Di search for solution

Marvelous say at first im parents no take am serious as dem tink say na one of those sickness till di tin come reach to di point wia im muscles come weak well-well.

“E come be say na my siblings come dey helep me dey do minor tins for me like to dey wash clothes, to dey do oda tins wey boys dey do come be challenge like football, I no come fit dey play football, If I dey run I go dey fall.

“My parents come begin carry me go hospital, at first dem no fit discover wetin be di problem, di tin come dey worse becos e be like e dey dey progress as I dey grow. Dem focus on native doctors wey say na spiritual problems, dem carry me go pastors too wey say na spiritual problem but I no belief am.”

Marvelous say na in di process im lose im parents within di space of one year between 2011 and 2012. Dia death worsen di situation for di family.

Muscular dystrrophy: Sonia Okwenna tori her journey with di condition wey no get cure.
The British Broadcasting Corporation

Marvelous sista tori

Marvelous say afta dia papa die for 2012, im notice say di same tin wey dey worry am dey do im sista too.

“Immediately my papa die for 2012, naim I come dey notice say di same tin wey dey do me, say my sister come dey show di same sign and symptom for her body. So na so her own case start. Gradually she come begin dey feel weak for every part of her body, now she ma no dey waka again.

Di last time me and my sista comot house na for 2020, wen we go one church programme, oda dan dat, na here we dey spend our days, weeks and years.” Marvelous tok.

Marvelous and Nnenna

BBC
Marvelous and Nnenna never comot dia house for two years

Marvelous sista wey be 19 years old and wey her dream na to be writer tell BBC Pidgin say she stop school for 2014 becos of di mata afta her teachers notice how she dey come late and dey fall and say she no fit dey waka and move well again.

“Di tin be say no be one day e start, e just dey come gradually, na wen I dey eight years na im I start to notice am, pipo come dey notice di way I dey waka wit my toes. Later, small-small, di tin come dey stretch my back.” She tok.

But Nnenna condition never progress reach Marvelous own for now. My own no worse like my broda.

“E get some few tins wey I fit do wey e no fit do, I fit baff myself, comb my hair, wash my clothes, wash plates sometimes and sweep.” She tok.

Marvelous and im family

BBC
Marvelous and im family

Family love

Marvelous and Nnenna be orphans but dem get brodas and one sista.

As Marvelous na di oldest broda, na im younger brodas dey hustle to take care of dem.

Na di brodas dey comot in di morning to go find wetin dem go chop and come back to take care of dem.

Marvelous broda carry am

BBC
Marvelous get to depend on im brodas dor almost everytin

“Di tin no dey easy to cope, you go work, come back cook, and support dem and e no dey easy and e dey affect me.

My wish na make dem dey alright, dem don struggle well-well I no want dat kind life for dem, I want make dem leave beta life.” Na so Mark, dia broda tok.

“E no easy, e no easy for you to get two siblings, younger ones wey no dey waka, you go go out dia, tink of yourself and tink of dem too, how dem go take eat, how dia life take be, actually now, my oda younger broda, now e don just comot go work to go find wetin dem dem go eat, di tin no easy to be honest

My wish for dem na say make God please make I just wake up one morning say dis children dem dey okay.” Na so dia elder sista add.

Marvelous

BBC
Marvelous say im bin wan become journalist

‘Mental and emotional torture’

Marvelous also tok about di mental and emotional challenge di condition don cause am.

“Dis my condition don make me feel like say I don dey lose my dream for life. Becos wen I bin dey go school I bin wan become journalist, but now, I no fit further my education. Dis condition don hinder me, if no be say I get assistance from my siblings here, everything na dem dey do am.

Sometimes I go just dey, e go just be like make my world come to an end becos e just be like I dey locked up in a cell.

Marvelous

BBC

‘Hope for di future’

“Pipo dey ask how two pipo from di same family go dey suffer from di same condition? Pipo dey tori say my mama bin suppose serve one deity for village but she no gree and n aim cause am but I no believe am” Na so Marvelous tok.

“Na be di first son and she, my younger sister wey get di same problem na di last born,

I be Christian and I believe say despite my condition and everytin wey I dey go through, I believe say God dey and e fit heal me but di issue be say becos e don affect me mentally sometimes I dey find am hard to even pray sometimes becos anger and regret dey full my mind sometimes becos I believe say I suppose dey outside dey do sometins like my mate to live a meaningful life but dat one no still stop me to believe say God still fit change my story.”

Marvelous and Nnenna

BBC

Wetin be muscular dystrophy?

According to UK National Health Service, Muscular dystrophies (MD) na group of inherited genetic conditions wey gradually dey cause di muscles to weaken and lead to an increasing level of disability.

Muscular dystrophy [MD] na progressive condition, wey mean say e dey get worse over time. E dey often begin by affecting a particular group of muscles, before e begin dey affect di muscles more widely.

Some types of MD dey eventually affect di heart or the muscles wey dem dey use for breathing, at which point di condition go become life-threatening.

Cure no dey for MD, but treatment fit helep to manage many of di symptoms.

Marvelous for im house

Getty Images
Marvelous for im house

Wetin dey cause am?

MD dey caused by changes (mutations) inside di genes wey dey responsible for di structure and functioning of pesin muscle.

Pesin dey often inherit di mutations from dia parents.

Cure no dey for MD, but different treatments fit help wit di physical disabilities and problems wey fit develop.

Treatments like mobility assistance – including exercise, physiotherapy and physical aids, support groups – to deal wit di practical and emotional impact of MD, surgery – to correct postural deformities, like scoliosis and medicine – like steroids to improve muscle strength fit helep.