 This is the way to do it. This is the way to do it. This is the way to do it. Challenges seem to surround us everywhere we look. But the good news is, solutions are right within us. You can be the solution if you decide to take initiative and stay committed. Sharon Jessica has more. Sharon, Karibu Sana to you in action. I would love to ask you, what is the backbone of your journey? Perperusha Binti was started in 2018 and the aim was to reach out to young girls, adolescent girls and young women in the informal settlement areas of Kisumu with information on sexual reproductive health and men's oligene. So our aim was to end gender-based violence in the informal settlement areas and the rural communities because these are the areas where GBV is very rampant. So this is why we started Perperusha Binti. But along the way, we also developed an interest in creating awareness in sickle cell because this is a disease that not so much or so many people speak out or talk about it. So just as we've measured on HIV AIDS, we talk it anywhere, everywhere and people have the information. We really wished that it happened the same for sickle cell. That's why we thought it's wise to start this so that we could also create awareness on the same. So what inspired you to start sickle cell awareness? Growing up, there are so many people that have died of sickle cell that could have been prevented. But then people are not aware, they don't have the information and some of us or some of our communities think this is witchcraft. So through these experiences, I learned that our community needed to know more and much about this disease. And I've had friends who have sickle cell and I was also inspired by their stories, their journey, how they afford it. And I'm also a sickler and that's why I decided to start this initiative because you can only work a race that you know. So I am well aware of it. That's why I felt so inspired to create awareness, talk to the community so that we can all know and have information about sickle cell so that we stop the rural communities and the information going around that it's a witchcraft and many other things that are embodied around sickle cell. And so being a sickler, how has your experience been? It hasn't been easy, but I will say I've had supportive family and supportive friends and supportive doctors that had made it a easier journey. But even with that, it's still difficult because sometimes you are able to take care of yourself and maybe survive the disease, but you can't survive things that people talk around you. Sometimes it's not the disease that kills sickle cell patients. It's the stigma and the discrimination around them in the community. So if you have this information, you can be able to stop the stigma in the community. So for me, I will say that I've been able to come this far and my friends, some of the people I've met on my journey of life because they've been supportive even in me creating awareness, they want to learn more and also they want to spread the news to the community about sickle cell. So I've been inspired by my journey and also by others around me. Interesting. So what was the initial goal? When did you just decide, okay, let me start creating awareness about this sickle cell? What was that thing that made you realize that, hey, I need to create awareness? So there are so many, I've experienced stigma. I've seen my friends experience discrimination and stigma around them and also in our community. I've seen people living with sickle cell being stigmatized and also the kind of life they've lived hasn't been so nice or good. So I will say there's a time we were in Kumbhawa Health Center where we went to create awareness and most of the people believe this is, which sickle cell is a witchcraft and they're made around sickle cell that are very surprising and you can't believe them. So these are some of the things that made us that it is very important to create this awareness. To make the community know that just as maybe HIV or maybe cancer, it's just a disease like the other and if it's well managed, someone can live as long as they want. So these are some of the things that made us that to see this in a different perspective. Yes. Just shortly, what kinds of myths are those? Because there's someone who actually believes them because had joined the myth. What kinds of myths are those? Some of the myths is that someone living with sickle cell cannot pass the age of 18 and people living with sickle cell cannot give birth or even carry baby. But our friends who have given birth to beautiful babies, our friends who are almost 40, people who are almost 30, but they have sickle cell, our friends who are 45, almost 50, but they have sickle cell. It's how we manage it and how we take care of ourselves and the kind of support that we have around us. Yes. How do you manage it? What does that mean? How do you manage sickle cell? Sickle cell is managed with drugs. We have different drugs that we take and we also take care of ourselves. But sorry to mention, I didn't say we could be talking about sickle cell, but someone doesn't know what sickle cell is. So I would just say sickle cell is a genetic disorder that makes you have pains and maybe severe pains if you say that. Like, a normal human does red blood cells around in shape, but a sickle cell patient, their blood cells are sickled. An example of the sickle that used to have is rice. So whenever there are much sickle blood in their body, it inhibits the flow of the blood and that gives them the severe pain that is called crisis in sickle cell. So these are the things that they go through and some of the challenges that sickle cell patients face is that these drugs are very expensive. You can't afford them. For those people living in the rural communities, those people that we measure on, our awareness measure on them, they can only afford maybe shelter food and check their children to school. But sometimes it's difficult for them to consistently be able to buy these drugs for their children. So we get that this is a challenge to most of them and even I wouldn't say only those in the rural places, even those of us that are just able, but sometimes it's very difficult because we don't have that money all the time. So these drugs are very expensive and also the treatment is very expensive sometimes because they are always on and off in the hospital. So these are some of the challenges. And are all the health centers or the ones in your community aware of this sickle cell identification management strategy? Yeah, I would say they're aware how to manage pain and even refer because when they are not able to take care of a sickle cell patient, they're allowed to refer them to a better healthcare. But then sometimes our health facilities or I wouldn't say the doctors but sometimes they're slow to act in some situation where a sickle is brought to the hospital leading them to death because they haven't been taken care of immediately because sicklers need immediate attention. If you delay for some time, they're gone because sometimes they have severe pain. So I would just like that we be keen in attending to these people even if you have others in the hospital and someone comes with sickle cell you can't just take care of them because these are people that will be well in one minute and the next time you are called that they're dead. Yeah. And are there any significant experiences you've had during this journey? Yeah, there's very many experiences we've had and I would say that talking about sickle cell in my community I've been an eye opener to most of my friends and even the community members because whenever we create awareness people want to know more about what is the sickle cell how does it happen, what can we do, how can we help people really want to know more about it and even sometimes we have our teachers where we go to hospitals just to talk to people we're living with sickle cell and when you are there and you talk to them they are able to understand what this is because at the end of the day when you tell them that you're not just talking about it at a perspective of a medic but you're talking about it at a perspective of a patient or a warrior so they feel you are in their shoes and this makes a big impact to us because they're able to go outside there and again they courage to take good care of themselves more because they know someone is living someone has survived this and they can too so these are some of the things that give us the strength to continue doing what we do and different people living with sickle cell just talking to them and telling them this is how you should take care of yourself avoid this, do this they get this information and also spread them to the community so that we are able just to create more awareness for more people to know more about this so that you can minimize the rate at which people are saying this is a myth and the rate at which patients die because of negligence Interesting So how do you reach out to your community through your organization in the awareness of sickle cell? Yeah, what we do is that we have meetings where we reach out to the community we just hold meetings in the community we call for community meetups where we organize and meet the community and talk about sickle cell we also have online interactions where we have zooms and talk about challenges, sickle cell phase we don't only talk about sickle cell but we talk about the community too we like teach the community what is to be done why they should stop the stigma and the discrimination why they should have a listening here to these people living with sickle cell so we don't only target people living with sickle cell we target community as a whole we also target the young girls and the young women in the community where we talk about being tested before you get married it's very important, you know your genes so that you don't get married with someone maybe the biology is too tough to some people but AS and SS you're not supposed to get married because you're going to have a child who is SS who has sickle cell anemia and sometimes it's a hard journey bringing up a child with sickle cell because of the finance the depression and everything so we create awareness on this and also we create awareness on screening newborn screening when you have a child and you are a young mother you should take your child to be screened whether they have sickle cell so these are early detections that we really emphasize in our dialogues and in our conversations in the community you're talking the biology coming from you is so much like a medics what is your profession? I'm a development strategist I've also done social work and community development but my journey has made me want to learn more about sickle cell so whenever I want to be talking I want to talk about what I know I don't want to be telling people that I think because someone will say that you're not sure about what you're telling us so I want to talk from a perspective where I know the information that I'm giving out that's true I've also learned AS and SS and how is the response from the community? I would say the community are we have a good reception they are receptive to us because they are able to listen they are able to ask and they really want to learn, they want to know and this is a good gesture for us because we get people who call who even WhatsApp just to know that I have a child living with this what am I supposed to do we even get people who are not Kenyans who just want to have more information because we do so much on our social media even sometimes we don't have activities but we just create awareness with some information that we relay so that people are aware so these are things that have made our kids because the community have embraced what we do because they really want to learn speaking of reach out do you have supporters or partners do you partner in within the organization for this agenda? we have had so many partners come on board to support us on this and we have partners even from Nairobi who are doing the same thing and I realized that we have a huge awareness support systems in Nairobi around Sikofail compared to Kisumu so I thought in Kisumu the awareness is not that heavy that's why it made me realize that we should be heavy on this we should make this heavy so we have partners that we partnered with Sikusel Federation of Kenya we have our dad that we partnered with in this we have the way she carries from Zimbabwe these are people that have helped us through this journey and we have other partners that I'm not able to mention but they've really been supportive towards our journey in creating awareness in Sikusel and even some doctors in Kisumu like Dr. Koth they've really come on board to help us just create awareness and make sure that the rate at which children are born in Kisumu children living in Sikusel are born in Kisumu goes down because we get that now 21 out of 100 children are born in Sikusel I have Sikusel trait in Kisumu so we have partners who have come on board to help us create awareness and also make this a success and you spoke of your social media platform what do you mind mentioning them in case I want to join and see what you do yeah we have social media platform Facebook we are Piperusha Binti Twitter at Piperusha B then we have Instagram Piperusha underscore Binti yes and are there any challenges you've had along the way and how did you maneuver them? yes we will say we have challenges because sometimes it's hard like financial challenges because we always need to create awareness on Sikusel but then us creating awareness like for now we always hold and raise us to support children from the marginalized community from the privileged families to purchase drugs so like last year we hold a coffee for champions Sikusel fundraiser coffee for champions it's a Sikusel fundraiser that works towards supporting 5 or 10 children living in the privileged families to purchase monthly drugs so when we call upon people to fundraise we organize these events and we request people to buy tickets for us to raise this amount to buy drugs for these children sometimes you know everyone is not going to embrace your idea and some of the challenges that we go through but no matter that we haven't been able to give up because I believe when you want something even if you don't have resources you just go for it because somebody is going to see what you are doing and they'll come on board and say how can I help so even as we do this we look forward that people will come on board and ask us how can they help and they're able to help so we have even challenges in the community where we have, when we create awareness some people think that maybe we have the money to support people living with Sikusel but then we are not so this is a challenge to us because we feel that we could be in a position to support but now we are not able to support so it's also a challenge that we face and we hope that someday we'll be in a position to support You talked about the coffee drive why coffee and how is it done? Coffee for champions Sikusel fundraiser was an idea that I nurtured from last year I thought that because September is Sikusel Awareness Month what will we do to people who are Siklas that are not able to buy drugs this was an idea when Covid came but then during Covid not so many people will afford even a meal so I had it in mind but I was like I can't do it now because sometimes people can't come on board so much because people are still struggling so last year when I started it it was an idea to help people living with Sikusel who are not able to buy these drugs because when Covid came some lost their job and so that so coffee for champions Sikusel fundraiser it's coffee because we thought coffee was a bit cheaper for people to come on board because maybe if it's a dinner dinner will be more expensive so coffee enables us to bring people together people from different diversity just to come and support people from underprivileged communities living with Sikusel to purchase their monthly drugs because as I said before these drugs are so expensive I wouldn't say that I can manage to buy them every time yeah even me sometimes I struggle too but that's why I thought it was wise what about that person who only has one meal a day are they able to so that's why I came up with the idea of holding a coffee and I would say in the first year I've got a good support a beautiful support from people so last year we supported like 10 children purchased drugs and these are drugs that are so expensive so when people start something they have a set destination in mind is that the case for you or how did you do it we want to reach the larger Nyanza and that is our aim not just by information but by even services because so far so good the journey has been challenges but we have so much success we have so much to be proud of because we've changed lives we've reached out to many girls in our community we've changed the perspective of some of our community members around Sikusel for me I would say it's still a journey for us but so far so good we are somewhere and what kind of support do you need the community to help in order to make this a movement success what I would need the community to support with is just to embrace what we are doing and also whenever we call for maybe like now we are calling people to purchase tickets for the coffee we request them to come out and support us in this and not just our community I would love to really request our government from the county government to the national government if they could provide drugs for people living with Sikusel give free drugs for people living with Sikusel just the way they have done for people living with HIV AIDS because sometimes children die not because they are not second care of not about negligence but then they lack their drugs they are not able to afford these drugs every month and also I would request them to strengthen the medications on Sikusel like make our doctors understand deeply about Sikusel because sometimes children outside there have died of negligence they are taken to the hospital but then the doctors have not given them the attention that is required so I would really request our government and even our community to come out and support us in creating awareness and also provide drugs to people living with Sikusel and what can you tell people who desire to create something worthwhile as you have done when you have an idea maybe you don't have the resources but just start with whatever you have when we started Pippurusha Binti I tell you we didn't have anything but we were able to just give information call people to come together, give information the next time you tell someone that you know I want to do this I've been doing this and this is how far I've reached can you chip in and support me they'll say yes because they've seen what you've been doing so whenever you have an idea just check off with it don't give up that you don't have resources don't give up that how will you go about it whenever you have an idea just implement it without resources just talk to people around you maybe some people will not understand what you're talking about or how you want it to be done but even without resources just start it you're a champion for Sikusel I would love to congratulate you on this journey May the Lord bless you because you're doing a good work Thank you so much you have had it if you have an idea if you feel you have a solution go ahead and start even without the resources go ahead and start and everything else will come along the way the friends, the supporters, the partners what you're going to along the way this has been Youth in Action I am Nyongweso Gremis