Precious Chiamaka na six-year-old wen her mama bin notice say one small bone dey grow for di back of her hand.
As she no sabi wetin dey grow for di back of her pikin hand, Precious mama carry her go hospital and na for dia dem come tell her say na her muscles dey turn into bones.
Di reality begin dey set in wen different places for her body begin dey swell and her body dey stiff wey no make her waka well.
She dey battle disease wey dey known as ‘Fibrodysplasia Ossificans Progressiva’ and dem dey also call am ‘stone man disease’.
Bone dey grow wia bone no suppose dey for her body.
Precious wey bin start a recharge card business to make ends meet for hersef tell BBC Pidgin about how her condition really dey painful.
Her body begin dey stiff, her body go bend before she go fit waka and she need to use walking stick support hersef.
Na since six years old Precious don dey battle di disease condition wey dey make her body stiff and she no dey fit waka well.
Na for hospital wey her mama carry her go make dem notice say na ‘Fibrodysplasia Ossificans Progressiva’ she bin get.
“Dem no born me like dis. E start wen I bin dey six years old, di sickness dey turn my muscle into bone. I dey live wit a disease condition called Fibrodysplasia Ossificans Progressiva.”
“My mama dey baff me, she come see one small bone for di back of my hand, she carry me go hospital, dem come tell me say my muscles dey turn into bones. As I dey grow, di tin dey progress.”
‘My body dey swell and e dey stiff’
To chop no easy for Precious sake of say her mouth dey sometimes dey stiff and she go need to support her mouth before she go fit feed hersef.
She no dey bend before, but di disease don really affect her wey be say she need to bend before she go fit waka or move from one place to di oda.
“Like as di tin bend me like dis, I no bend like dis before. Before I go fit put food for my mouth, I go first use hand fan support myself and still use my walking stick hold my mouth so my teeth go fit open to eat anything.”
Di bone wey dey her waist don stiff and e dey make am difficult for her to sit down. Even her body no fit stretch well again as bone wey dey grow for her body dey increase in size.
“My body dey stiff, e go first swell, afta e don swell, I go come see say e don increase in size and di place go stiff and I no fit stretch am again.”
“E go dey stiff like dat, I no fit sit down as di bone for my waist don stiff and I no fit waka freely.”
How she dey fight di stigma
Precious Chiamaka get hope say she go still become barrister but di sickness don stop her from accessing plenti opportunities.
She no fit waka freely for public as she tok say pipo dey make jest of her, but she no and she don bold to come out for social media.
“I dey hide myself for social media before, but I later dey see pipo wey dey like me. Di sickness don deprive me of plenti tins and I wan become barrister.
If I fit see solutions wey go help me, di tin dey pain me and e no dey comfortable at all.”
Wetin be Fibrodysplasia Ossificans Progressiva?
Fibrodysplasia Ossificans Progressiva na one genetic disorder wey dey make di tissue swell and di muscle tissue go dey replaced by bone wey dey restrict movement.
According to di national Library of Medicine, di sickness dey always dey noticable for early childhood and na from di neck and shoulders e dey start from.
Anyone wey dey affected no go fit waka well and to chop go also dey difficult as extra bone wey dey grow for dia joint go restrict dia activities.
- Difficulty in breathing: Dis dey happun sake of say bone don grow for wia air suppose pass round di body.
- Difficulty in eating or speaking: To chop go dey hard sake of di condition wey bone don grow for her rib and to open mouth go dey difficult.
- Stiffness: Many body parts no go fit move well becos bone don grow for wia flexible muscles suppose dey.
- No ability to move: Dis one dey always dey obvious and many times na wheelchair di pesin go dey use to waka round.
According to di National Institutes of Health, Fibrodysplasia Ossificans Progressiva no get any cure for now and di only tin wey pipo wey dey affected fit do na to manage am.
“Currently, e no get any effective medical treatment for Fibrodysplasia Ossificans Progressiva.”
Pipo wey get di disease fit also dey take some kain drugs wey go help dem reduce how di bone go grow for dia body.
Source: BBC
