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.\
\ \
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\f0\b \cf0 ASTON\ 02:02 - 02:05 CHANEL TAYLOR, SICKLE CELL ADVOCATE\
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CHANEL TAYLOR\ \
02:02 - 02:05 It's the worst pain any human can experience.\
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\f0\b ASTON\ 02:05 - 02:07 DUNSTAN NICOL-WILSON,
SICKLE CELL ADVOCATE\ \
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DUNSTAN NICOL-WILSON\ \
02:05 - 02:07 Excruciating pain.\ \
\ LOWLAH BLOOM\
\ 02:07 - 02: 09 It feels like I'm being stabbed.\
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\f0\b \cf0 ASTON\ 02:09 - 02:12 MARY SHANIQUA, SICKLE CELL ADVOCATE\
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\ MARY SHANIQUA\
\ 02:09 - 02:12 Imagine being
stabbed by like a million different knives. \
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\f0\b ASTON\ 02:12 - 02:15 DANIELLE JINADU,
SICKLE CELL ADVOCATE\ \
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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. \
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\f0\b ASTON\ \
03:12 - 03:15 AISHA BABATUNDE, SICKLE CELL ADVOCATE\
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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.\
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\f0\b \cf0 ASTON\ \
05:00 - 05:02 DR. ANNETTE AKINSETE, DIRECTOR OF SICKLE CELL
FOUNDATION NIGERIA\ \
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\ 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\ \
\ \
\ }