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BBC Pidgin of Monday, 12 June 2023

Source: BBC

Di Fight to scata di tori of sickle cell 'curse' for one town for Kenya wia one quarter of di pipo get di disease

Di town get plenti pipo with di disease Di town get plenti pipo with di disease

Sickle cell disease dey affect more pipo for di kontris for Africa dan anywia else for di world. BBC Africa Eye follow one campaigner for di mata go one town for Kenya wia almost one quarter of dem dey live with di genetic disease.

For di small town of Taveta wey dey inside Kenya Taita Hills wey near di border to Tanzania, families dem siddon under one canopy for local health clinic.

Dat na wia Lea Kilnga Bey, di woman for front halla "Who hia get sickle cell?"

"Na all of us", be wetin di crowd reply wey mean say either dem get am or dey look afta pesin wey get.

For dis busy market town for di bottom of Mount Kilimanjaro wey get just 22,000 pipo, na almost one in four pipo get sickle cell, and na one of di highest rates for di kontri.

For pesin wey get sickle cell, di red blood cells wey normally suppose round dey form like sickle and so no fit transport enough oxygen around di bodi. Pipo wey get sickle cell fit get pain wey fit last for weeks.

According to di World Health Organisation (WHO), two thirds of di pipo wey get sickle cell around di world dey stay for African kontris.

Na di most common genetic disease for di region and di survival numbers no good.

Pipo wey die from sickle cell disease, fit die either because of infection or serious anaemia.

One 2011 report wey di US National Library of Medicine bin publish about di death of pikin dem up to di age of five show "early-life mortality of 50%-90% among children dem born in Africa wey get [di disease]",

One woman for di clinic ask question say, "dem say pesin with sickle cell no fit live pass 20 years old, dem only get 15 years and di most years dem fit live for na 18 years".

Ms Bey ansa say she get sickle cell wey dem find for her bodi at six months and she dey her 30s and still dey kampe.

Anoda woman hala say, "na curse".

For 2017, Ms Bey bin start di African Sickle Cell orgamnisation wey be NGO with focus to improve di lives of pipo wey get sickle cell. She dey visit communities to take spread awareness of di genetic disease. but she go back Taveta wey be her home town to help di pipo for dia.

Ms Bey tell BBC Africa Eye say, "plenti communities dey link sickle cell to ancestral curses and witchcraft".

"Na wetin dey happun wen pipo no know wetin dey happun for di community. Pipo go form dia own story. So I gatz go tell pipo say sickle cell no be witchcraft. No be ancestral curses. Na sometin we fit solve."

One of di main wahala for pipo wey get sickle cell for Taveta and oda towns for Kenya na access to medicine.

'Na food or melecine'

Daily treatment na wetin dis pipo need to live normal lives like: antibiotics to prevent infection, drugs to treat di blood cells and dietary supplements like folic acid to help di anaemia.

"Most pipo wey get less than $1 or $2 per day no fit sacrifice food fr house to go dey buy expensive medicine," Ms Bey tok.

"Na either di food or melecine".

She sabi pass anyone how e dey like to experience wetin dey dey call sickle cell crisis - wey be extreme pain wey blooked blood vessel dey cause and e fit affect any part of di bodi.

Video diaries

Ms Bey don record video diaries of how e dey do am wen she get her sickle cell crises. As she dey for di bed, without medicine, her eyes half closed, she try to explain how di pain dey painful reach.

She no want make oda pipo suffer.

For Taveta, she also join one group of pipo wey dey protest for hospital for beta treatment.

One woman hold packet of drugs say, "dem dey give us expired medicine."

Anoda woman hala say, "plenti pipo don die because dem no get beta medical care".

Anoda one tok sa, "I tell my friend say I dey give my pikin medicine but im eye still dey yellow. She find out say di medicine don expire."

Jaundice na common symptom of sickle cell. Yellow eyes don turn normal tin for dis town.

Albert Loghwaru, 50, na di leader of di protest group. Two of im pikin find out say dem get sickle cell and dem suffer stigma even though dem plenti for Taveta wey get di disease.

"Pipo for hia go call us two tins. Either we get demons wey dey suck our pikin blood or we be HIV positive".

Oga Loghwaru wan fight to get access for treatment for im community.

Because of im campaign and Ms Bey own, dem don open di first eva joint haemophilia and sickle clinic for di Taita Taveta county.

But no be di end of di fight for Ms Bey.

"We just dey start. No be marathon be dis. No be di pesin wey run fast go win. Dis na relay race."