WEBVTT - Ep 56 Sickle Cell Disease: Invisible Illness, Enduring Strength 0:00:01.480 --> 0:00:02.679 My name's Marsha. 0:00:03.560 --> 0:00:05.840 I lived in the UK, as you can tell by 0:00:05.880 --> 0:00:11.360 my accent, and I pad super cell for the longest 0:00:11.640 --> 0:00:13.640 time I can remember. 0:00:15.120 --> 0:00:19.880 My parents found out when I was about six years old. 0:00:20.800 --> 0:00:24.360 My mom knew she had the trade, but my dad 0:00:24.560 --> 0:00:27.639 didn't know that he carried the trade. And obviously my 0:00:27.840 --> 0:00:31.840 older sister was born and she just had a trade. 0:00:31.960 --> 0:00:34.080 So it was my mom was like, okay, fine, and 0:00:34.159 --> 0:00:37.560 she got that from me. But when I came about, 0:00:37.760 --> 0:00:41.600 I was born with another sort of illness on top 0:00:41.640 --> 0:00:44.919 of sickle cell, which is called the six deficiency, so 0:00:45.080 --> 0:00:49.839 it kind of mossed the sickle cell. So over the 0:00:50.080 --> 0:00:52.640 many years growing up, I was like becoming sick. 0:00:52.680 --> 0:00:56.080 They couldn't quite work out. And then it was when 0:00:56.120 --> 0:00:56.800 my younger. 0:00:56.560 --> 0:00:58.640 Sister was born they said, you know, let's be tested 0:00:58.720 --> 0:01:01.640 for sickle cell, and that's when they found out that 0:01:02.680 --> 0:01:08.280 I had the full blown disease. I kind of understood 0:01:09.160 --> 0:01:12.520 I had an illness much later on. 0:01:12.840 --> 0:01:16.520 I would say, when I was about nine eight or nine. 0:01:17.280 --> 0:01:20.000 Yes, I went to hospital appointments prior to that, but 0:01:20.440 --> 0:01:22.800 it just didn't really sunking. I kind of let my 0:01:23.000 --> 0:01:25.920 parents deal with it all, like, okay, well you. 0:01:25.959 --> 0:01:26.759 Manage my health. 0:01:27.120 --> 0:01:29.520 I managed being a child and playing with my friends 0:01:29.560 --> 0:01:30.320 and stuff like that. 0:01:30.720 --> 0:01:34.840 I didn't really understand it too, I think as I 0:01:34.959 --> 0:01:37.400 went later on in my teenage years, when I went 0:01:37.480 --> 0:01:41.480 started going to secondary school, that's when I started taking 0:01:41.520 --> 0:01:45.480 more control over my illness and saying, Okay, well, you know, 0:01:45.520 --> 0:01:47.840 I have to eat right, I have to dress right, 0:01:47.960 --> 0:01:51.280 I have to make sure I get enough rest, and 0:01:51.880 --> 0:01:54.840 you know, not overstress myself because I know if I don't, 0:01:55.280 --> 0:01:58.840 these things can trigger off a crisis and I can 0:01:59.520 --> 0:02:02.000 be left out of school for like weeks on end. 0:02:02.560 --> 0:02:05.240 And it was only when I'm joined to sort of 0:02:05.280 --> 0:02:10.680 like be positive choir that I actually came out and 0:02:10.720 --> 0:02:13.000 a lot of my school friends, I was like, do. 0:02:12.960 --> 0:02:13.320 You know what? 0:02:13.400 --> 0:02:14.400 I did not know? 0:02:14.480 --> 0:02:17.280 You heard sicker celt I didn't know how to explain 0:02:17.320 --> 0:02:19.639 it to them in a way, and I didn't know 0:02:19.960 --> 0:02:22.600 how they would receive me. I always think, like, you know, 0:02:22.639 --> 0:02:25.880 if I said it, I would lose friends, which I 0:02:25.880 --> 0:02:28.120 remember having a friend who said they didn't want to 0:02:28.120 --> 0:02:29.359 be my friend because they. 0:02:29.320 --> 0:02:32.120 Thought they could catch sickle cell if they held. 0:02:31.919 --> 0:02:35.280 My hand, And I was like, it doesn't work that 0:02:35.320 --> 0:02:37.280 way unless you're born with it. 0:02:37.320 --> 0:02:40.560 Does not work that way, So it was very. 0:02:41.120 --> 0:02:45.440 I shield myself just so I wouldn't have to face 0:02:46.160 --> 0:02:48.360 that negativity, and that hurt. 0:02:49.080 --> 0:02:50.760 Later on my adult years. 0:02:51.000 --> 0:02:53.560 I was like, you know what, if you don't like 0:02:53.639 --> 0:02:56.480 me the way I am, then that's fine. 0:02:56.680 --> 0:02:59.720 Somebody else will. There's many people in this world that will. 0:03:00.280 --> 0:03:05.760 And I grew that confidence and was able to mental 0:03:05.880 --> 0:03:09.480 or talk toever teenager girls and boys who were in 0:03:09.480 --> 0:03:13.520 my situation to say, you know, don't let super cells 0:03:13.560 --> 0:03:16.520 stop you from doing what you want to do. When 0:03:16.520 --> 0:03:18.280 I do get in a crisis and I'm in pain, 0:03:19.040 --> 0:03:21.760 the best way to describe it it has to be 0:03:22.040 --> 0:03:26.000 like when you get a really bad cold and you 0:03:26.120 --> 0:03:30.320 have eggs and pains and all of your body hurts 0:03:30.360 --> 0:03:33.600 on it ten times worse skill than aches and pains. 0:03:33.639 --> 0:03:36.440 When you've got a cold and you just want it 0:03:36.520 --> 0:03:40.320 to stop, and I've had it's brought me to tears 0:03:40.480 --> 0:03:44.520 before many times, and it's brought me to the parts 0:03:44.520 --> 0:03:46.640 where I'm like, do you know what, I don't want 0:03:46.680 --> 0:03:49.119 to be here on this earth because I don't want 0:03:49.200 --> 0:03:50.120 experience to pay. 0:03:50.560 --> 0:03:52.600 Why do I have to go for it? You know? 0:03:52.680 --> 0:03:52.840 Why? 0:03:53.000 --> 0:03:57.280 Was I the unlucky one? And I did kind of go. 0:03:57.320 --> 0:04:01.120 For the fase of blaming my parents, so to speak, saying, 0:04:01.160 --> 0:04:03.240 you know, you should have checked each other before. 0:04:03.040 --> 0:04:04.800 You had me, why didn't you do this? 0:04:05.400 --> 0:04:11.040 And you know, your mind starts thinking loads of things 0:04:11.120 --> 0:04:14.800 of you know, I if I wasn't here, would. 0:04:14.560 --> 0:04:15.560 I be in a better place? 0:04:15.720 --> 0:04:18.880 Or if I was born before my sister, would I 0:04:18.920 --> 0:04:19.799 be in a better place? 0:04:19.839 --> 0:04:22.240 And you just think many things. 0:04:23.080 --> 0:04:25.400 Every day you wake up. You don't know if it's 0:04:25.440 --> 0:04:27.640 going to be a good day, if it's going to 0:04:27.640 --> 0:04:30.679 be a bad day. And I think that affects your 0:04:31.400 --> 0:04:36.640 social life as well, because you're forever counseling on your friends. 0:04:37.200 --> 0:04:40.120 And it's the same with relationships. 0:04:40.400 --> 0:04:43.920 I've like broken up with a lot of partners because 0:04:43.960 --> 0:04:47.720 they don't understand the extent of sick of self going 0:04:47.720 --> 0:04:52.520 into hospital that's our last result on our mind. We 0:04:52.800 --> 0:04:56.880 tend to not quite going into the hospital, but we 0:04:57.200 --> 0:04:59.040 like we want to try and treat it the best 0:04:59.080 --> 0:05:02.520 we can at home. Sometimes we don't like the hospitals 0:05:02.560 --> 0:05:06.080 because of the stigma that we get. We get looked 0:05:06.120 --> 0:05:10.520 upon as oh, we're drug addicts or you know, we're 0:05:10.520 --> 0:05:12.880 not really in pain, we're just he because we need 0:05:12.920 --> 0:05:15.760 to fix, and it's like I would don't want to 0:05:15.760 --> 0:05:16.440 be in hospital. 0:05:16.520 --> 0:05:17.880 This is the last place I want to be. 0:05:19.000 --> 0:05:23.800 Lucky enough, my family are amazing, bless their hearts. I 0:05:23.839 --> 0:05:27.760 have snapped up them many times, but it's not the 0:05:27.839 --> 0:05:30.599 case that I mean to. It's just a case of 0:05:31.839 --> 0:05:34.839 all I can feel is this pain, and I don't 0:05:34.880 --> 0:05:38.000 want to feel the pain anymore. And I have apologized 0:05:38.000 --> 0:05:41.279 to them afterwards, but now they kind of know my routine. 0:05:41.600 --> 0:05:43.600 Not you know, when I say I'm in a crisis, 0:05:43.800 --> 0:05:45.440 they don't answer silly questions. 0:05:45.480 --> 0:05:47.320 They're just like pay. 0:05:47.160 --> 0:05:51.840 Meds, heatpad or hot bath or if it's that bad, 0:05:52.000 --> 0:05:54.520 do you need to go to the hospital. And obviously 0:05:54.640 --> 0:05:59.640 I've got a son who is fantastic. I'll call him 0:05:59.680 --> 0:06:02.520 a little Dr Quinn. The minute you know, I say 0:06:02.680 --> 0:06:04.159 mummy's not feeling very well. 0:06:04.160 --> 0:06:04.960 He's on it. 0:06:05.000 --> 0:06:08.200 With the pain meds, the hot cups of tea, the 0:06:08.240 --> 0:06:11.640 hot water bottle, everything you can think of to make 0:06:11.800 --> 0:06:13.880 to cheer me up. He'll put my favorite movie on 0:06:14.040 --> 0:06:18.760 and cuddles and there with me. So he is literally amazing. 0:06:19.200 --> 0:06:22.280 But because it's just me and him that lived together, 0:06:22.960 --> 0:06:26.040 I feel like that sometimes he feels his childhood got 0:06:26.120 --> 0:06:28.760 robbed in. Sometimes he feels that he can't be a 0:06:28.839 --> 0:06:32.240 child because he has to look after mummy and also 0:06:32.800 --> 0:06:36.080 be himself, which is I knew was quite hard. And 0:06:36.120 --> 0:06:38.080 I think that was the same thing when I knew 0:06:38.200 --> 0:06:40.280 when I was going to have children. You know what 0:06:40.480 --> 0:06:43.720 impact would my health have on him? 0:06:44.440 --> 0:06:45.960 And for me? 0:06:46.760 --> 0:06:51.719 When I felt pregnant. After my pregnancy, that's when my 0:06:51.920 --> 0:06:55.560 sickle sell got worse. I had a minor stroke. More 0:06:55.640 --> 0:06:58.719 things were happening to my body where I felt like 0:06:58.800 --> 0:07:03.320 it was deteriorating, and I feel that that was not 0:07:03.600 --> 0:07:07.719 made or where to me when I was thinking about 0:07:07.760 --> 0:07:11.160 starting a family. So I'm now going over that hurdle 0:07:11.240 --> 0:07:15.880 of experience and things where I feel that maybe I 0:07:15.920 --> 0:07:18.560 could have been made more aware of and given that 0:07:18.640 --> 0:07:23.400 option of what to do. But nevertheless, he's still a 0:07:23.400 --> 0:07:28.040 blessing and I loven't pieces and I think now that 0:07:28.240 --> 0:07:33.080 where I joined to be positive choir, it's a journey 0:07:33.160 --> 0:07:38.400 that you don't want to end. Singing for Britain's got talent, 0:07:39.040 --> 0:07:44.720 singing for the Queen, Meghan, Prince Harry, Prince William, everyone, 0:07:44.880 --> 0:07:46.240 it was amazing. 0:07:46.720 --> 0:07:48.200 It was like I was living a dream. I had 0:07:48.200 --> 0:07:50.080 to keep saying pinch me. Somebody pinched me? Is that 0:07:50.200 --> 0:07:54.520 Megan over there? No, So it was absolutely amazing. 0:07:54.600 --> 0:07:59.560 And the way since we've come on that platform it's gone. 0:07:59.680 --> 0:08:02.120 Viral, I think it's got more awareness. 0:08:02.160 --> 0:08:06.560 Everybody's starting to get involved and starting to be more 0:08:06.560 --> 0:08:10.320 clued up and taking notice of what sickle cell is, 0:08:10.360 --> 0:08:14.320 and you know how they can go around helping to 0:08:14.400 --> 0:08:15.680 spread the awareness. 0:08:16.280 --> 0:08:17.840 And I feel that it's. 0:08:17.800 --> 0:08:21.400 A way that brings the community together as well, because 0:08:21.440 --> 0:08:24.520 in the choir there are many people who have the 0:08:24.600 --> 0:08:28.840 illness and we share our stories. We've got you know, 0:08:28.880 --> 0:08:32.880 everybody experiences sucle cell differently, so it's nice and where 0:08:32.920 --> 0:08:36.880 we've become like a big unit and we get to 0:08:37.040 --> 0:08:41.680 share it around the world, which is amazing, and we 0:08:41.800 --> 0:08:44.120 have a laugh, we have a love and that's the 0:08:44.120 --> 0:08:47.520 main thing. Yes, you have your down days, but also 0:08:47.640 --> 0:08:51.640 you have your good days. But everyone always says, you know, 0:08:51.720 --> 0:08:54.720 how is it You're always smiling, And I think I 0:08:54.720 --> 0:08:58.000 look at the positive that now I don't see sickle 0:08:58.040 --> 0:09:01.960 cell as a burden as I did before. I actually 0:09:01.960 --> 0:09:04.600 see it as a gift and a blessing to have 0:09:04.880 --> 0:09:07.760 because I can go out and spread the word about 0:09:07.800 --> 0:09:12.760 six sol and make friends. Yeah, I'm happy, literally happy. 0:09:12.840 --> 0:09:14.439 I couldn't be more happier. 0:09:17.040 --> 0:09:18.679 So my name is Sheriff to sob them. 0:09:19.440 --> 0:09:22.600 I was born in Kampala, Uganda, a small East African country, 0:09:23.640 --> 0:09:28.920 and I have scle cell disease. So when I was born, 0:09:29.480 --> 0:09:32.520 my mom and dad had a very love story. They 0:09:32.520 --> 0:09:34.559 gave birth to the baby boy like all parents, so 0:09:35.000 --> 0:09:37.520 very excited to have a baby boy. I think after 0:09:37.520 --> 0:09:39.880 about four or five months after that, I started to 0:09:39.880 --> 0:09:42.520 show up with I was very irritated. I was alreadys 0:09:42.559 --> 0:09:46.360 crying and they told me I had all the my social. 0:09:46.080 --> 0:09:47.760 In hands and didn't know. They didn't know what was 0:09:47.760 --> 0:09:48.320 really going on. 0:09:49.000 --> 0:09:52.240 And my mom kept on going to different health centers 0:09:52.360 --> 0:09:55.439 and until the time one doctor did sugges said, no, 0:09:55.520 --> 0:09:57.080 what we need to do a cyclo cell test to 0:09:57.120 --> 0:09:59.360 be able to find out if this after has cell 0:09:59.800 --> 0:10:01.880 and and so that was the change of their story 0:10:01.920 --> 0:10:05.200 because once she told my dad, they actually broke up 0:10:05.240 --> 0:10:08.520 and my dad left her because he's like, no, I've 0:10:08.559 --> 0:10:10.680 not had any child or cicle cell and in my 0:10:10.720 --> 0:10:14.240 family we don't have sicosle business. So my mom ended 0:10:14.320 --> 0:10:16.640 up having to raised me as a single mother because 0:10:16.640 --> 0:10:19.720 my dad had left. During that time, she was pretty 0:10:19.800 --> 0:10:21.560 scared about what's going on. She didn't know what was 0:10:21.559 --> 0:10:24.720 going on because at that time the ninety sicosa wasn't 0:10:24.760 --> 0:10:27.680 really a very big thing. Most people who have cycle 0:10:27.760 --> 0:10:30.439 cell To date in Uganda, we find that over ninety 0:10:30.440 --> 0:10:32.319 percent of the babies who were born in shep was 0:10:32.360 --> 0:10:35.480 Sel died before their fifth pack. So this is mostly 0:10:35.480 --> 0:10:38.480 because we don't have a comprehensive for a program that 0:10:38.520 --> 0:10:41.199 you're going to be diaganized and go to Cico cell 0:10:41.320 --> 0:10:43.360 center and be followed up to sell the care. 0:10:43.679 --> 0:10:46.000 All that has not been there if it has started 0:10:46.040 --> 0:10:46.400 to come up. 0:10:46.440 --> 0:10:47.959 I think in the last one one or two three 0:10:48.000 --> 0:10:50.599 years we're starting to see scosol the centers across the 0:10:50.600 --> 0:10:54.319 country in Uganda. So during that time when she was 0:10:54.360 --> 0:10:57.360 pretty long, pretty scared, she named me to Suvida. So 0:10:57.559 --> 0:11:00.000 my second name is Sheriff to Suvida to Subida means 0:11:00.200 --> 0:11:02.760 we hope. So high institution with the names with them 0:11:02.920 --> 0:11:05.040 was mostly because of the fact that she wanted to 0:11:05.320 --> 0:11:07.800 have a way to always have some hope in her heart. 0:11:07.960 --> 0:11:10.200 Because if everyone around you is trying to say your 0:11:10.240 --> 0:11:13.040 baby's going to die, every mom will preace care. But 0:11:13.080 --> 0:11:15.120 as a child growing up, I really I didn't know 0:11:15.200 --> 0:11:17.160 what was going on, yes, or have pain and cry 0:11:17.160 --> 0:11:19.920 and ask what's going on? And my mom didn't really 0:11:19.920 --> 0:11:21.800 have a wolf explaining it to me until I think 0:11:21.800 --> 0:11:24.880 to my six or seven years. But when I go 0:11:25.040 --> 0:11:27.280 to play and kids have come to play, we'd say, 0:11:27.600 --> 0:11:29.479 they would say and and I, which. 0:11:29.240 --> 0:11:31.199 Means in my local anguage, you don't play with him. 0:11:31.480 --> 0:11:31.880 He's sick. 0:11:32.080 --> 0:11:33.800 So that that's why I start to realize that there's 0:11:33.800 --> 0:11:37.079 something different about me. So that was my kind of 0:11:37.160 --> 0:11:40.120 childhood experience. And this was the case whereby I'll be 0:11:40.200 --> 0:11:42.200 on the pitch trying to pick the ball and I 0:11:42.200 --> 0:11:44.640 feel pain in my leg, feel pain in my hand, 0:11:44.679 --> 0:11:47.440 and said and sometimes I just couldn't walk. My friends 0:11:47.520 --> 0:11:50.320 would have to carry me home. I'd always ask my mom, 0:11:50.320 --> 0:11:51.079 what's going on? 0:11:51.200 --> 0:11:53.760 Why me? Why am I feeling like this? Why I think? 0:11:53.800 --> 0:11:55.520 I remember all the time after growing up, I asked 0:11:55.520 --> 0:11:57.280 her for a knife slight that I could cut off 0:11:57.280 --> 0:11:59.280 my hand and cut off my leg because it was 0:11:59.520 --> 0:12:01.640 bringing too much pain for me. And they're like, no, 0:12:01.720 --> 0:12:04.319 we can't do that. You can't just just can't just 0:12:04.440 --> 0:12:07.079 cut off the leg because you took my pain. But 0:12:07.160 --> 0:12:10.400 even then yes, I would feel very stigmatized and feel 0:12:10.480 --> 0:12:12.640 very bad about it. And when it went when he 0:12:12.679 --> 0:12:14.720 went to school, it was actually very different as well 0:12:14.720 --> 0:12:18.000 at school because at school in the rainy season, the 0:12:18.000 --> 0:12:20.480 extreme seasons, or being pained and I couldn't go to school, 0:12:20.480 --> 0:12:22.640 so you missed like two weeks or three weeks of school, 0:12:22.679 --> 0:12:24.679 and the teachers to say, where has he been, and 0:12:24.760 --> 0:12:27.200 so often my mom would have to explain, you know 0:12:27.240 --> 0:12:29.160 what he has cycle, sell if he has missed, if 0:12:29.160 --> 0:12:31.520 he tells you his hands are sick, he can't write, 0:12:31.559 --> 0:12:32.840 it's fine, you have to understand. 0:12:32.840 --> 0:12:35.040 But it was really hard for the teacher to understand because, 0:12:35.080 --> 0:12:35.360 like I. 0:12:35.320 --> 0:12:38.160 Said, this disease is most partly nothing about like even 0:12:38.160 --> 0:12:41.320 the teachers like this kid has just just has an excuse. 0:12:41.600 --> 0:12:44.240 Every time I want him to come and drawn the blackboard, 0:12:44.280 --> 0:12:46.680 he's saying his hand is hurting. You want him to 0:12:46.720 --> 0:12:50.920 be part of the class activity, He's saying he feels 0:12:50.960 --> 0:12:52.720 pain in his leg and feels pain and there. 0:12:53.040 --> 0:12:55.520 So that was another issue because of my cycle. 0:12:55.559 --> 0:12:59.360 So I had complications like John this in my eyes 0:12:59.360 --> 0:13:01.520 and had the distant and prettish all those things that 0:13:02.440 --> 0:13:05.560 made me look more of an outlier like you don't. Yes, 0:13:05.600 --> 0:13:07.920 you look like everyone else, but you your eyes are 0:13:07.920 --> 0:13:09.840 pretty yellow. So that's the thing that you have to 0:13:09.840 --> 0:13:12.480 explain everyone why your eyes yellow. I didn't know how 0:13:12.559 --> 0:13:14.719 much to break it down, but all I would say, yes, 0:13:14.720 --> 0:13:16.160 I have cicle said it is a blood disease. 0:13:16.160 --> 0:13:16.839 That's all I would say. 0:13:16.880 --> 0:13:19.760 And when I get sick, and we had a school nuns, 0:13:19.800 --> 0:13:21.640 I would go and get careful the nuns. So high 0:13:21.640 --> 0:13:24.160 school was was a bit was a much better experience. 0:13:24.760 --> 0:13:27.079 So during my second day and the university, I did 0:13:27.120 --> 0:13:29.199 get sick, and I got sick and I missed I 0:13:29.240 --> 0:13:31.400 think I missed almost three or four weeks of school. 0:13:31.800 --> 0:13:33.920 So when everyone was asking why Sharif and I mean 0:13:33.960 --> 0:13:35.640 and I didn't really do my disclosure. And that's the 0:13:35.679 --> 0:13:37.000 time I had started to day, I was I was 0:13:37.040 --> 0:13:39.400 taking a very before woman. And when I got to seek, 0:13:39.400 --> 0:13:41.280 I was in the hospital and she tells me, you 0:13:41.280 --> 0:13:44.520 know what, I can't do with you because of yoursical cell. 0:13:44.600 --> 0:13:48.240 I mean, I've never seen myself with someone with That 0:13:48.360 --> 0:13:50.800 was a tinning point for me. So that that was 0:13:50.840 --> 0:13:53.920 my driving fact and now to make a change in 0:13:54.120 --> 0:13:56.080 not only in my life but in the life of 0:13:56.080 --> 0:13:58.680 all those people living so such that they don't have 0:13:58.760 --> 0:14:03.360 to go through what had gone to. So it was me, myself, Ashoff, 0:14:03.520 --> 0:14:06.839 and two other people, Evelyn and another guy's Aalim. We 0:14:06.920 --> 0:14:10.320 agreed to create an organization called Scostal Network You. It 0:14:10.360 --> 0:14:12.480 was the first cico cell and I profit that we 0:14:12.520 --> 0:14:16.920 did register. Because of my background and stigma and experience, 0:14:16.920 --> 0:14:19.520 I had. One of the first projects that implemented was 0:14:19.560 --> 0:14:23.680 having psycoso concer training. When I looked at my background 0:14:24.120 --> 0:14:27.080 of lavato science and the fact that in our market 0:14:27.160 --> 0:14:29.640 you could have people test for HIV, I thought myself 0:14:29.640 --> 0:14:30.800 and said, I think we should be able to test 0:14:30.800 --> 0:14:33.880 for cico cell. We started out at all our community 0:14:33.920 --> 0:14:36.240 events would have a team of lavaty people to do 0:14:36.280 --> 0:14:38.960 the cicosol screening, our counselors to do the you know 0:14:39.080 --> 0:14:41.360 have councilor cert that people could understand what it means 0:14:41.400 --> 0:14:43.720 if you trade, what it means if you if you 0:14:43.800 --> 0:14:45.680 have pico cell, and a lot of those things. And 0:14:45.920 --> 0:14:48.440 after two years of this, our local meanings of Health 0:14:48.440 --> 0:14:53.200 actually did accept and adopt this program. It's now been 0:14:53.440 --> 0:14:55.800 rolled out and several health centers have these rapid co 0:14:55.880 --> 0:14:58.200 celf testing kids and people know can be happy to 0:14:58.200 --> 0:15:01.200 access the cicosol screen test whatever they are. So in Uganda, 0:15:01.240 --> 0:15:04.240 we have a tribe called the Baganda. Tribe makes up 0:15:04.240 --> 0:15:07.040 the biggest proportion of the population, but we did have 0:15:07.160 --> 0:15:09.440 a local name for sicco cell. And this is not 0:15:09.480 --> 0:15:11.640 only the Baganda, but most tribes in Uganda do not 0:15:11.720 --> 0:15:13.880 actually do not actually have a local name for sco cell. 0:15:14.320 --> 0:15:16.320 And the indicator for this means that if you don't 0:15:16.320 --> 0:15:17.720 have the local name for something, it means you're not 0:15:17.720 --> 0:15:19.720 talking about it. If you're not talking about it, then 0:15:19.800 --> 0:15:21.920 then that explains all the stigma. So because people don't 0:15:21.920 --> 0:15:23.920 talk about it is no name. But the biggest one 0:15:23.960 --> 0:15:25.760 for me as the advocate is the fact that the 0:15:26.120 --> 0:15:28.240 kingdom gave us a local name for sico cell. They 0:15:28.280 --> 0:15:31.000 did say, now we pronounced that sico salling that we 0:15:31.120 --> 0:15:35.040 just called Umbili. At least now somebody who's uneducated, somebody 0:15:35.040 --> 0:15:38.000 who had never been to school, can have a word 0:15:38.080 --> 0:15:40.600 that they can not to mean sico Cell, and that 0:15:40.680 --> 0:15:42.920 in a way helps us beat the stigma because then 0:15:43.040 --> 0:15:45.240 people can be able to talk about. 0:15:45.200 --> 0:15:46.000 Their mother town. 0:15:47.000 --> 0:15:49.560 Looking back on how the genius come from the time 0:15:49.600 --> 0:15:52.840 when we introduced communitis Coroso screening. From the time when 0:15:52.880 --> 0:15:55.120 we have a local name to the fact that we have, 0:15:55.160 --> 0:15:57.080 we have not been able to support the imaginence of 0:15:57.120 --> 0:15:59.280 so many Pico so nonprofities. And for example, the time 0:15:59.320 --> 0:16:02.360 when we sarted, there was only one nonprofit in Uganda 0:16:02.640 --> 0:16:05.840 working on SIICO so called Circnstatation of Uganda. Today, as 0:16:05.840 --> 0:16:08.240 I speak, seven years later, we have over twenty five 0:16:08.640 --> 0:16:12.400 cb odds committey best organization all working. 0:16:12.080 --> 0:16:13.640 To CICO selling local communities. 0:16:14.120 --> 0:16:17.560 I think in twenty nineteen I decided know what I've been, 0:16:18.000 --> 0:16:19.680 I've been an advocate for the past few years. I 0:16:19.680 --> 0:16:22.280 think I need to think of something much engine that's 0:16:22.280 --> 0:16:24.400 a I fund. I thought of coming back to grad school, 0:16:24.720 --> 0:16:26.280 and I decided to come back to the US for 0:16:26.360 --> 0:16:27.280 my grad schools. 0:16:27.280 --> 0:16:27.720 I came back. 0:16:27.760 --> 0:16:30.640 I went to the University of Caansas as a peach student. 0:16:31.600 --> 0:16:33.200 When I came to the US, I was hearing a 0:16:33.240 --> 0:16:35.680 lot of this thing of the raciore, the racial bias 0:16:35.720 --> 0:16:38.360 in terms of Icosa, and it had actually never happened 0:16:38.360 --> 0:16:40.600 to me until one time. I think it may I 0:16:40.640 --> 0:16:42.440 go to the er. I had a lot of pain 0:16:42.480 --> 0:16:44.040 in my I was actually very sick. 0:16:44.040 --> 0:16:44.840 I had a lot of pain. 0:16:45.400 --> 0:16:46.920 I spent the whole thing in the r they give 0:16:46.960 --> 0:16:48.240 me all the pain made that I was still in pain. 0:16:48.480 --> 0:16:51.400 But guess what happened to me? The er doctor says, 0:16:51.640 --> 0:16:53.800 you're fine. We have checked everything very normal. So we 0:16:54.080 --> 0:16:56.760 can admit to one of the kid driving factors in 0:16:56.840 --> 0:16:59.680 terms of why even as advocates living in the US, 0:16:59.680 --> 0:17:02.440 we need to come out and promote more awareness and 0:17:02.480 --> 0:17:05.400 boscle soucers that the doctors would have a more understanding. 0:17:05.520 --> 0:17:07.399 I think one of the key in wantant aspects. 0:17:07.840 --> 0:17:09.480 It's not it may not be so much of a 0:17:09.480 --> 0:17:10.919 big deal in the US, but it's the big deal 0:17:11.040 --> 0:17:13.119 is where in the world That part whereby people not 0:17:13.320 --> 0:17:16.960 understanding and accepting scle celf having all these meats and beliefs. 0:17:16.960 --> 0:17:19.960 So it still goes back to awareness people and having 0:17:20.119 --> 0:17:22.800 understand that this is like any other blood disease. If 0:17:22.840 --> 0:17:24.679 you can take good care of yourself, if you can 0:17:24.720 --> 0:17:26.720 have a comprehence you follow up, if you can do 0:17:26.760 --> 0:17:29.199 whatever we can do to stay healthy, then I can 0:17:29.320 --> 0:17:31.600 leave like any anybody else. I shouldn't worry about death. 0:17:31.600 --> 0:17:33.720 I shouldn't worry that will not be able to meet 0:17:33.720 --> 0:17:37.800 my dreams. My story started out because of a heat break, 0:17:37.920 --> 0:17:40.239 because of the love sad love story ended up being 0:17:40.280 --> 0:17:42.520 a sipo's advocate today. I was able to find love, 0:17:43.400 --> 0:17:46.800 married to Sophia and have two kids, Kneeman Shet, and 0:17:46.880 --> 0:17:48.960 they're part of my support system to keep me healthy 0:17:48.960 --> 0:17:52.320 and strong and going. So I appreciate them and everyone 0:17:52.320 --> 0:17:53.199 who's supporting me. 0:17:53.359 --> 0:18:31.879 Thank you. 0:18:37.840 --> 0:18:40.919 Thank you so much Marcia and Shurie for sharing your 0:18:40.960 --> 0:18:44.520 stories with us. We really really appreciate it and we 0:18:44.560 --> 0:18:47.840 want to tell you a bit more about our amazing guests. 0:18:48.400 --> 0:18:50.800 Marcia started her blog My Life was Sickle Cell in 0:18:50.840 --> 0:18:54.120 twenty sixteen and has since been recognized for her awareness 0:18:54.200 --> 0:18:58.480 raising efforts by appearing on TV programs, radio shows, newspapers, 0:18:58.640 --> 0:19:01.320 you name it. And in her first hand she mentioned 0:19:01.359 --> 0:19:03.840 being a member of the BE Positive Choir, which is 0:19:03.880 --> 0:19:06.359 a choir made up of people with sickle cell disease 0:19:06.560 --> 0:19:09.879 or those who have friends or family members affected and 0:19:09.920 --> 0:19:13.000 the B Positive Choir has made amazing strides in raising 0:19:13.040 --> 0:19:16.399 awareness of sickle cell disease as well as encouraging blood 0:19:16.400 --> 0:19:20.119 donations and also, as you heard, they were on Britain 0:19:20.119 --> 0:19:23.520 Scott Talent and performed in front of the Royal Family, 0:19:23.560 --> 0:19:24.960 which is pretty dang cool. 0:19:26.119 --> 0:19:31.360 That's amazing. Our other incredible guest, Sharif, has been instrumental 0:19:31.440 --> 0:19:34.600 in a number of different advocacy and outreach efforts which 0:19:34.600 --> 0:19:37.359 you heard a bit about in his first hand including 0:19:37.720 --> 0:19:41.159 launching the East Africa Sickle Cell Alliance, working with the 0:19:41.240 --> 0:19:45.359 Pan African Sickle Cell Federation International, and serving as the 0:19:45.400 --> 0:19:48.920 first executive director of the Uganda Sickle Cell Rescue Foundation. 0:19:49.320 --> 0:19:51.200 That's incredible, so amazing. 0:19:51.600 --> 0:19:55.520 Sharif's amazing advocacy and outreach efforts have been recognized by 0:19:55.560 --> 0:19:59.719 many organizations. In twenty seventeen, he was named Amandela Washington 0:19:59.720 --> 0:20:03.280 Fellat through the Young African Leaders Initiative. In twenty eighteen, 0:20:03.359 --> 0:20:06.800