voiceover: this is bbc news. we'll have the headlines and all the main news stories for you at the top of the hour, straight after this programme. my name is lea. i may look like a normal twentysomething... ..but my life is often consumed by illness.

approximately 1000 people are born every day in africa with sickle cell. i have sickle cell disease. up to 90% of us die before the age of five. 0ur government do little to help us. and i'm advocating to those in power to change that. even in our own communities, people with sickle cell are often treated like outcasts because of misconception and stigma surrounding the disease.

i'm putting my life on the line to fight this deadly disease. and to dispel the myths that surround it. sickle cell is not witchcraft. it's not — it's not ancestral curses. it's something that we can solve. 0h, damn! the abnormal sickle—shaped red blood cells in my body affect my oxygen levels. one of the biggest problems with sickle cell is oxygen. like, if you don't have sufficient oxygen, so you can only push your body far for a good number of days before you need to really rest.

now, he's telling people, "this guy has sickle cell," and they don't even know i have sickle cell. i've been raising awareness about the devastating impact of sickle cell on patients and families for years. ..some of us have not accepted sickle cell... ..subscribe and... we'll have this conversation again. thank you! i try to help my fellow survivors. fresh, green leafy vegetables for people living with sickle cell, like myself. and advocate to the authorities to act. it's also a way for the government, the ministry, to see that these people are a forgotten demographic in this country and they need to set up health and support infrastructure to be able to manage their disease.

when i was younger, i never knew what sickle cell was. ijust knew, like, sometimes, my sisters would just wake up in pain at night. throughout my battle with sickle cell, my brother paul has always been my rock. now, he's at my side again and i take on my biggest challenge yet. with my brother's help, i plan to fight through my illness and run the nairobi half marathon.

when it comes to sickle cell, they're encouraged against getting tired. i also knew that when she bites into something, she doesn't let go. the marathon idea came — came into my mind when i was like, "i need to do something. "i need to do something to — to physically show that i can "— i can do it, like, someone with sickle cell "can do it." my doctor has cautioned against running the marathon — it could trigger a crisis and bring on severe complications — but i'm determined to do it. notjust for me.

80 million of us suffer with this disease across africa. we have to believe. the other day, i was telling one of my sickle cell advocates in nigeria that i am doing the marathon and she was like, she was like — she was very, very upset. she was like, "no! "no! "sickle cell patients have this thing of saying "they can do this. "you cannot do a marathon. "lea, please! "you cannot." so, of course i can. of course i can. and i will, so... yeah, i want to do that. not to show her because yes, i have a chip on my shoulder, but i want to live a normal life. i want to do these things that i want to do. i want to see where my body can — can — can stretch to, yeah? without snapping, of course.

for my training, i'm going back to my home town, taveta. it's also the place where i think i can make the biggest difference for thousands of people living with the disease. in taveta, almost a quarter of the population have the sickle cell gene. but those living with the disease receive very little support. ijoin a local group as they prepare to march on a nearby hospital and demand better services for sickle cell patients. we go to the local hospital to protest.

albert is the leader of this group. like so many other parents of children with sickle cell, he has suffered from the stigma and poverty that surrounds the disease, but he is determined to find a solution. albert was one of the first people i met and he was one of the few who spoke to me. like, the passion — like, this was one of the parents that i saw who did not feel the shame or the stigma of sickle cell.

i know how destructive the myths surrounding sickle cell can be, especially in rural areas. a lot of communities, we attribute sickle cell to ancestral curses, witchcraft. this is — ok, this is a situation for any unknown thing in the community. people form their own stories around them. so, i had to go and tell people that sickle cell is — is not witchcraft. it's not — it's not ancestral curses. it's something that we can solve. but slowly, things are beginning to change.

i organised a meeting, hoping the community might come out. i needn't have worried. with the community behind us, albert and i decide to join

forces and up our game. albert and i scour the community, finding more and more people that have sickle cell in their families,

many of them in dire need of medicine. i soon realised the true scale of the problem and how desperately the people in taveta need access to quality, affordable care. majority of people who earn less than $1 a day or $2 a day will not sacrifice the meal of their home to buy this expensive medicine. it's either the meal or the medicine. i'm getting my community to help it needs. but it is tiring work and the marathon is only four weeks away. so this is the tavern.

today, i was able to run, but i ran for approximately 20 seconds and had to stop, take a breath, relax, walk, then run again for 20 seconds and, yeah, it was... it showed how unfit i am — like, i am extremely unfit, but i am working on that. my family has always been there to help me through my most difficult times but they, too, have their challenges. all my sisters have sickle cell. my oldest sister magdalein succumbed to sickle cell.

the sister who i lost, i never met her. she died before i was born. death's on the way — sickle cell and just the way we live in our house, how it affected my parents,

my sisters. i could say that that created, like, a kind of environment. sickle cell has made me and my family stronger. but as i prepare for the marathon, the warnings from my doctor keep playing on my mind. the doctors disagree with me about my doing the marathon. essentially, i will be reducing the oxygen circulating to my body, the functionality of my organs and risking things like strokes or neuroretinopathy or, like, something just obstructs somewhere and it'lljust collapse, and, yeah... as the day approaches, i'm excited and determined. mc: ladies and gentlemen, wed like to welcome you to the 2018 nairobi standard chartered international marathon! i'm feeling good at the starting line.

the adrenaline kicks in and i'm all set. cheering and applause. starter's gun fires. cheering and applause continues. after 2km, my body starts to give out. the sun is so hot, my breathing becomes laboured. ifeel like i'm chained to a boiler. man, i have to keep going! my brother and friend both rush to support me. but i can't give up now. i have to reach the end.

i tapped into my energy deep down. and somehow managed to push through. but as i crossed the finish line, my body simply gave out. i felt faint. ijust could not catch my breath. this was everything my doctor and friends had warned me about. the end of the marathon was scary and could've cost me my life.

but it showed me that, once i set my mind on something, there's nothing on earth that can stop me. i head back to taveta with an renewed energy! i'm determined to get sickle cell patients and families the support they deserve. and i decide to confront our member of county assembly. the governor promises his support and i speak to as many

officials as i can, hoping to drum up support for a specialist centre. thank you so much, mama. finally, after years of advocating, a special clinic for sickle cell patients in taveta is unveiled. cheering. all the battles, all the obstacles — finally, we are here.

having a sickle cell clinic in taita—taveta is not easily done. having you of all come together for the entire country is not a force to joke with and... applause. having passed through this trouble with us, now fearless, these people here show me that we are not alone, i am not alone, we are not walking alone, we are creating this path. however long it will take, however hard the struggle, the lives lost — maybe some of us will not be here to see the future — but we must walk. 0k? thank you so much. applause.

for me, this new clinic isjust the beginning of my mission to improve the lives of all sickle cell patients and families notjust in kenya, but all over africa. we're just getting started. this is not a marathon. it is — it is not the one who — who is the — who is the winner, who runs the farthest or who runs the fastest will win. this is a relay race. and me, i know that — i realise that this problem, i will not solve its entirety in my lifetime and the person coming after me will be — you know, will have it easier and be able to take it even further. it's a beautiful morning in

taveta, kenya, and we are doing 10km to holili with my mum — she's right ahead, she's a rummer — and, yes, so we'll be doing ten, a runner — and, yes, so we'll be doing ten, ten, so 20km today, so i'm so excited, guys! look at that sunrise! so, it has been a rainy experience. chuckles. we are all wet! wet! 0ur brother here, it's like he was dipped in water! in a swimming pool! 0h! neverfelt so much rain in my life, and that was an amazing experience! and, yeah, so tired.

we've just finally finished 10km. now, we are doing ten more. hello. 0ur fairly unsettled spell ofjuly weather is set to continue through the remainder of the week, really, and we're going to be seeing temperatures gradually on the rise over

the next few days. but through thursday, some sunshine in the forecast, particularly so towards the east, but also a bit of rain, mainly across the north—west of the uk, down to the fact that we've got this area of low pressure approaching from the atlantic, whereas high pressure across the continent is dominating things further south and east. so for thursday, fairly fresh start to the day. the best of the sunshine will be for eastern scotland, eastern and southern parts of england and into wales, but cumulus cloud builds through the day and that willjust bring the odd shower, mainly in the north and the west of the british isles. more persistent rain arrives across northern ireland during the afternoon. it'll be windy here, with gusts about a0 mph, and temperatures 15 to 22 degrees. don't think we'll see any interruptions at wimbledon today due to the weather, but just a very small chance of a shower in the afternoon as that cloud builds. next few days at wimbledon, hot and humid on friday, thunderstorms and showers possible for saturday and for sunday. now back to thursday, in the afternoon and the evening, that area of rain drifts out of northern ireland across parts of scotland, becoming fairly light and patchy overnight, but across england and wales, quite a warm, humid night.

temperatures certainly remaining in double figures overnight. so not quite as fresh compared to wednesday night. but what we're going to see on friday as this area of low pressure, this frontal system drifts its way northwards, it'll open the doors for this warm and moist flow coming in from the south. so a hot, humid—feeling day for some of us on friday, especially so across england and wales. a bit more cloud and showery rain at times for scotland and northern ireland, with a bit of a breeze blowing, too, but for the warmest spots, we're likely to see 28 or 29 degrees on friday, typically the low—20s, further north. now heading on into the weekend, we've got that warm, moist, humid air with us, and then low pressure again moving in from the atlantic, so the combination of those two things means we could see some very lively weather on saturday. some thunderstorms possible almost anywhere where you see these heavy showers and that hot, humid air. fresher airjust returning from the west later in the day. a bit of uncertainty about the timing, location of some of those showers, still quite warm ahead of them, with temperatures

again in the mid—20s. so a brief spell of heat, i think, friday into saturday, but some thunderstorms through the weekend and they're going to continue the unsettled trend into next week. bye— bye.

this is bbc news.

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