So there's this building in the middle of Croydon, and it's a centre for people with an inherited disease called sickle cell. And there's these paintings on the side of the building of red blood cells, the healthy happy ones are dancing and playing football but there's also these sad pale-looking ones. And there's one in particular in a hospital bed, and it's shaped like a sickle. I used to drive past this building all the time as a kid, and without knowing it I essentially had a basic grasp of what sickle cell was. But despite the paintings on the building, I didn't grow up with that many people talking about sickle cell.
However, it wasn't just me. So I knew something was wrong with me, but 00:41 – 00:43 I didn't know I had sickle cell anaemia. 00:43 – 00:47 I would just randomly have pain and my back, or my legs would give way, or my arm 00:47 – 00:50 would give way, or I can't play P.E today, but I didn't know why. JAMEISHA 00:50 – 00:54 But how was that even possible? How could someone like Lowlah grow up not even 00:54 – 00: 56 knowing she had sickle cell? 00:56 – 00:59 It's one of the most common genetic disorders and affects millions of people 00:59 – 01:00 around the world. 01:00 – 01:04 So the big question is, why aren't we talking about it more? 01:04 – 01:06 And what's the stigma? 01:14 – 01:16 So what is sickle cell? 01:16 – 01:20 Well, it's actually the name of a group of blood disorders.
01:20 – 01:22 But the most common one that we'll be talking 01:22 – 01:26 about in this video is sickle cell aneamia. LOWLAH BLOOM 01:26 – 01:29 How would I describe it to someone that has no idea what it is? 01:29 – 01:34 It's where your haemoglobin or red blood cells are shaped abnormally. JAMEISHA 01:34 – 01:37 This is a healthy red blood cell. 01:37 – 01:41 It's round and flexible and flows through the blood vessels easily. 01:41 – 01:44 But this is a blood cell produced by someone with sickle cell. 01:44 – 01:49 It's not round. It's more like a crescent moon or a sickle. 01:49 – 01:1 And the problem with blood cells like these, besides the shape is that they're rigid 01:51 – 01:53 is that they're rigid and sticky. 01:53 – 01:57 They get stuck in small vessels and block blood flow and oxygen to the body. 01:57 – 02:02 We call this a sickle cell crisis and yes, it's extremely painful. pardtx720tx1440tx2160tx2880tx3600tx4320tx5040tx5760tx6480tx7200tx7920tx8640pardirnaturalpartightenfactor0 f0b cf0 ASTON 02:02 – 02:05 CHANEL TAYLOR, SICKLE CELL ADVOCATE SUBTITLES f1b0 CHANEL TAYLOR 02:02 – 02:05 It's the worst pain any human can experience. f0b ASTON 02:05 – 02:07 DUNSTAN NICOL-WILSON, SICKLE CELL ADVOCATE SUBTITLES pardtx720tx1440tx2160tx2880tx3600tx4320tx5040tx5760tx6480tx7200tx7920tx8640pardirnaturalpartightenfactor0 f1b0 cf0 DUNSTAN NICOL-WILSON 02:05 – 02:07 Excruciating pain. LOWLAH BLOOM 02:07 – 02: 09 It feels like I'm being stabbed. pardtx720tx1440tx2160tx2880tx3600tx4320tx5040tx5760tx6480tx7200tx7920tx8640pardirnaturalpartightenfactor0 f0b cf0 ASTON 02:09 – 02:12 MARY SHANIQUA, SICKLE CELL ADVOCATE SUBTITLES f1b0 MARY SHANIQUA 02:09 – 02:12 Imagine being stabbed by like a million different knives.
f0b ASTON 02:12 – 02:15 DANIELLE JINADU, SICKLE CELL ADVOCATE SUBTITLES f1b0 DANIELLE JINADU 02:12 – 02:15 Really digging in there and like twisting the blade. DUNSTAN NICOL-WILSON 02:15 – 02:18 You can get that pain anywhere in your body. LOWLAH BLOOM 02:18 – 02:21 A scorpion with like blades attacking your bone. CHANEL TAYLOR 02:21 – 02:24 It feels like I'm having an exorcism in my sleep. JAMEISHA 02:24 – 02:29 And it's not only the extreme pain, there's a number of other severe complications that 02:29 – 02:31 come with having the disease. 02:33 – 02:35 Managing sickle cell means lifelong treatment, 02:35 – 02:40 which is usually in the form of medication and pain relief, supplements like folic acid and 02:40 – 02:42 blood transfusions. 02:42 – 02:46 There is actually a cure though, a stem cell transplant, but these aren't done for 02:46 – 02:49 for absolutely everyone for a few reasons. 02:49 – 02:52 Partly the cost, partly health risk factors. 02:52 – 02:57 As far as genetic diseases go sickle cell is one of the more common ones 02:57 – 03:00 and it predominantly affects people of African descent on the continent 03:00 – 03:02 and across the diaspora. 03:02 – 03:05 But if this is true, why are there still stories of people with sickle cell 03:05 – 03:07 growing up not knowing about it? LOWLAH BLOOM 03:07 – 03:12 My mum didn't have a sit down with me explaining to me what my condition was.
f0b ASTON 03:12 – 03:15 AISHA BABATUNDE, SICKLE CELL ADVOCATE SUBTITLES pardtx720tx1440tx2160tx2880tx3600tx4320tx5040tx5760tx6480tx7200tx7920tx8640pardirnaturalpartightenfactor0 f1b0 cf0 AISHA BABATUNDE 03:12 – 03:18 At first, I was angry because I knew my parents were taking precautions against me falling ill 03:18 – 03:19 and all of that, 03:19 – 03:23 but it was like, oh you didn't really tell me why you were doing all these things. LOWLAH BLOOM 03:23 – 03:29 I didn't know anyone experiencing this same illness as me and I didn't quite understand it 03:29 – 03:30 myself fully at that time. AISHA BABTUNDE 03:30 – 03:34 To me it was anger at first, yes. 03:34 – 03:37 And then trying to figure out okay, how do we go from here? LOWLAH BLOOM 03:37 – 03:40 There is a stigma attached to sickle cell. And a lot of people 03:40 – 03:44 don't feel comfortable talking about it because of the lack of knowledge surrounding it. JAMEISHA 03:46 – 03:52 Nigeria has the highest rate of sickle cell in the world with an estimated 150,000 03:52 – 03:55 babies born with sickle cell anaemia each year. 03:55 – 03:59 But despite the prevalence of sickle cell in countries like Nigeria, 03:59 – 04:04 some of that stigma still sticks around in some cases.
And part of that could be attributed 04:04 – 04:08 to historical and spiritual explanations about why sickle cell happens 04:08 – 04:11 and why it was taking the lives of so many children. DANIELLE JINADU 04:11 – 04:15 There's actually a term in Yoruba that basically used to be used for people with sickle cell 04:15 – 04: 17which is the children that come and go. JAMEISHA 04:17 – 04:24 The term is abiku is Yoruba and in Igbo it's ogbanje. 04:23 – 04:28 And these terms often refer to a spirit that predestines a child to die early and be reborn 04:28 04:29 again and again 04:29 – 04:33 And while modern advancements in medicine has given us an explanation 04:33 – 04:37 as to how sickle cell works, some of the stigma still sticks around. MARY SHANIQUA 04:37 – 04:42 Sickle cell patients are kind of seen to be less than or seem to be 04:42 – 04:46 being attacked by the devil or some enemy somewhere. 04:46 – 04:51 It's heartbreaking, you know, to hear that and have to navigate that LOWLAH BLOOM 04:51 – 04:55 People, you know, didn't have access to education, didn't have access to healthcare. 04:55 – 04:58 You're having babies that were born one minute, good one minute, 04:58 – 04:59 and then they're dead the next. pardtx720tx1440tx2160tx2880tx3600tx4320tx5040tx5760tx6480tx7200tx7920tx8640pardirnaturalpartightenfactor0 f0b cf0 ASTON 05:00 – 05:02 DR.
ANNETTE AKINSETE, DIRECTOR OF SICKLE CELL FOUNDATION NIGERIA SUBTITLES f1b0 DR. ANNETTE AKINSETE 05:00 – 05:04 The communities that tend to still believe in the spirituality of it are in the 05:04 – 05:07 rural communities, but they're getting better. JAMEISHA 05:07 – 05:09 That's Dr. Annette Akinsete 05:09 – 05:12 director of Sickle Cell Foundation Nigeria. DR. ANNETTE AKINSETE 05:12 – 05:16 Don't forget the psychosocial aspects, because it's just as important as a physical illness. 05:16 – 05:21 When you notice that there are issues they tend always to be issues that we deal with 05:21 – 05:24 that are psychosocial because of stigma, because of discrimination. 05:24 – 05:27 These are things to deal with every day of their lives. JAMEISHA 05:27 – 05:30 So what can be done to reduce the stigma of sickle cell and improve the 05:30 – 05:32 lives of people living with it? CHANEL TAYLOR 05:32 – 05:40 We need to sit down and iron out all the stigmas and stereotypes within the community 05:40 – 05:41 within the African community. AISHA BABTUNDE 05:41 – 05:44 More funding more awareness. 05:44 – 05:46 We can't just keep talking about prevention.
05:47 – 05:53 There are also those of us living this life and you need to find a way 05:53 – 05:57 to make sure they are living the best life as much as possible. LOWLAH 05:57 – 05:59 We're so used to suffering in silence. 05:59 – 06:03 I think there's something more than, bigger than sickle cell community 06:03 – 06:04 bigger than the black community. 06:04 – 06:07 It's a condition that we've learned over the years to deal with. 06:07 – 06:11 So it's really hard to sometimes have this conversation because people feel ashamed 06:11 – 06:12 or a sense of guilt. 06:12 – 06:15 There's a lot of trauma around not talking about our pain. 06:15 – 06:20I'92m now comfortable with knowing that it's okay to not be okay. Add social innovation as a channel owner When narrowing the strategy }
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