World Sickle Cell Day 2020: ‘Di pain of sickle cell be like say pesin use hammer dey knack nail all over your body’

Tokini Omubo-Pepple na year three Law student wey don live with sickle cell anaemia for 20 years.

Sake of her experience, she start di Sickle Cell Awareness and Health Forum (SCAHF) to teach pipo about di disease and provide support for oda Sickle Cell warriors.

She tell BBC Pidgin say since dem born her na im she know say she get di disease because she always dey weak and sick.

Tokini say e hard to live with sickle cell anaemia because di crisis fit come at any time without warning and if e bad, na hospital e fit land pesin.

"To live with sickle cell dey hard. Di pain dey all over your body especially all your joints, if no be dat one, den you dey treat malaria or you need blood, e hard. I just take two pints of blood just last week.

Di pain of sickle cell be like say pesin dey use hammer dey knack nail for all your joints, and sometimes e go concentrate for one side either your hand or your leg and dat one fit last for one week."

Tokini Omubo-Pepple say di disease really affect her during her secondary school days as many times she miss school and even some school terms because she dey hospital bed for one crisis. She don write exam sef inside hospital and even register for her WAEC exam inside hospital.

She add say e get time she nearly die because she get low blood and dem rush her go hospital but di hospital pipo no quick attend to her so she come faint.

"Dat na one time wey my father and my sister really fear for my life. But my dream na to break dat myth say pipo with sickle cell no dey live long. Di oldest pesin with sickle cell die at age 89. Dat na inspiration to me and I believe say I go pass am."

Tokini wey be last born of four children say Na only she get di disease for her family and before she no dey gree tok about her status but she realise say many pipo still dey ignorant about di disease na im make she start di SCAHF group for Whatsapp for 2018 and now dem don grow well.

She also say make pipo do genotype counselling and know dia genotype as Nigeria na di kontri wey get di highest number of pipo with sickle cell and dat na because many pipo no dey aware about am.

"Sickle cell stop ma dream for become priest, chop all ma moni "

Ndama, 59 years, papa for six pikin dem, dey for hospital for Yaounde, Cameroon seka complications.

Ndama tori how from 13 years e star get crisis. "Some taims ma eye bi di close, laik say ah blind, ah start use waka stick too".

Wen Ndama manage get ordinary level certificate e no bi fit continue school. But, around 40 years de crisis reduce.

Laik all warriors, for get moni for treatment na serious headache. "if ah wan calculate all de moni weh ah don spend till now, e go don reach FCFA 40m ($6307)".

Any attack for pain na around FCFA 150,000 ($256) for hospital, if you get laik ten for one year, na plenti moni.

Help for sickle cell warriors

For dis World sickle cell day, Somo Francis Glenn, mimba for Emilie's Smile Foundation, warrior, go for central hospital for put smile for Ndama Michel, Donald Ngwa and oda warriors dia faces.

"Today na day for smile, bi proud of who we bi, share de little we get wit odas", Somo tell dem.

Somo weh e bi laik for stay own e own for seka stigma, di advice warriors say make deh di take plenti wata, rest, chop fain and avoid work weh e di give stress.

"Wit sickle cell e bi easy for catch Coronavirus, so warriors get for respect measures", e add.

Somo weh e no wan let de sick put laziness for e head, take vegetables, fruits, oranges, wata melon, pineapples, wata and soap to warriors and oda patient for Haematology unit for Yaoundé Central hospital.

Wetin be sickle cell?

Sickle cell anaemia na disease wey pesin fit inherit from im parents.

Pesin fit get sickle cell if im parents get some kain genotype. Like husband and wife wey be AS genotype fit born pikin wey get sickle cell.

Also if one parent na SS and di oda na AS, dem go born pikin wey be SS.

Wen pesin red blood cell no fit cari enough oxygen go round di whole bodi den dat pesin get sickle cell.

Also, for normal pesin bodi di blood cell dey round and flexible but for pipo wit sickle cell bodi di red blood cell dey stiff, e dey gum togeda and somtimes instead of round e get shape like moon.

Dis unusual shape dem make di cells hang inside di small blood vessel and blood flow go slow or somtimes e go block oxygen make e no circulate for di whole bodi.