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Sickle cell under the spotlight

Join us for a day of special events for patients and the public, to raise awareness and support for sickle cell disease on Sunday (26 March) at Addenbrooke's.

The event, called ‘Sickle Cell and Blood Transfusion: The Future’, will be held between 10am and 2pm at the Deakin Centre next to car park two on the Addenbrooke’s Hospital site.

WATCH: Tok's story of living with sickle cell disease

Link: https://youtu.be/Z3-QMxM8KXY

Video transcript

00:00:02:22 - 00:00:05:06

Sickle Cell,

00:00:05:06 - 00:00:06:19

I mean, you hear a lot about,

00:00:06:19 - 00:00:07:17

you know, people

00:00:07:17 - 00:00:09:16

not understanding it, professionals

00:00:09:16 - 00:00:12:04

not understanding it.

00:00:12:04 - 00:00:15:18

And I think the reason for it is it's a

00:00:15:19 - 00:00:19:17

black-related disease.

00:00:19:19 - 00:00:22:10

There's not much in terms of treatment

00:00:22:10 - 00:00:23:05

for it.

00:00:23:05 - 00:00:24:04

It's just difficult

00:00:24:04 - 00:00:27:24

to explain to people how you're feeling

00:00:28:01 - 00:00:30:04

and for people to believe you,

00:00:30:04 - 00:00:31:20

especially where,

00:00:31:20 - 00:00:33:09

like I said, there's no treatment.

00:00:33:09 - 00:00:35:04

Most of the treatment are just, you know,

00:00:35:04 - 00:00:36:03

coping mechanisms.

00:00:36:03 - 00:00:39:01

Physically, most of us look fine.

00:00:39:01 - 00:00:40:08

There's nothing wrong with us

00:00:40:08 - 00:00:41:13

except that we pain

00:00:41:13 - 00:00:43:07

and we're rolling and crying.

00:00:43:07 - 00:00:45:06

You know, just look at us.

00:00:45:06 - 00:00:47:16

But since, you know,

00:00:47:16 - 00:00:48:14

in the last ten years,

00:00:48:14 - 00:00:51:14

there's been leaps and bounds,

00:00:51:15 - 00:00:53:16

a little more understanding

00:00:53:16 - 00:00:54:18

about the disease.

00:00:54:18 - 00:00:57:23

There's been physicians and consultants

00:00:57:23 - 00:00:58:20

who have taken

00:00:58:20 - 00:01:00:20

a particular interest in it.

00:01:00:20 - 00:01:01:16

You know, like Dr.

00:01:01:16 - 00:01:04:08

Besser, he's been very good.

00:01:04:10 - 00:01:05:20

And I think, yeah,

00:01:05:20 - 00:01:08:02

there's still a long way to go,

00:01:08:02 - 00:01:10:11

but, you know,

00:01:10:11 - 00:01:11:12

it is improving.

00:01:11:12 - 00:01:13:05

It has improved, I will say,

00:01:13:05 - 00:01:13:24

over the years.

Among the highlights will be a biographical dance show by SIN Cru called ‘Finest’, it explores various topics through the eyes of a dancer and ex-boxer diagnosed with sickle cell disease.

There will also be an opportunity to meet sickle cell patients and their carers, learn about the impact of the disease in Uganda, and latest developments in sickle cell and blood matching.

Visitors will get the chance to ‘build’ DNA, see an apheresis machine close up, ask questions about how sickle cell affects the body, and join a quiz on the subject.

More on sickle cell disease

Sickle cell disease is a group of inherited red blood cell disorders that affect haemoglobin, the protein that carries oxygen through the body.

The condition affects more than 20m people worldwide.

Sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious complications such as infection, acute chest syndrome and stroke.

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