When you say you have sickle cell, the first question you get asked is:
'What's that?'
You still can't comprehend the pain that I'm going through.
I personally just don't like talking about it.
I've been told like: 'I can't be your friend, just because of what you go through.'
My name is Chris, and I have sickle cell.
Did I ruin the shot?
Sickle cell disease is a blood disorder that is inherited from parents.
It affects your red blood cells,
so red blood cells are generally doughnut shaped, like a circle,
and when they have sickle cell they become like a kind of crescent moon,
so like a sickle shape, hence the term sickle cell.
And when they kind of pass through the blood vessels they get sticky
and they clump together, kind of causing pain bouts,
what's referred to as a crisis.
It feels like the feeling of being stabbed, but at kind of the rhythm of your heartbeat.
That's kind of the best way I can put it into words.
When the blood sickles, it therefore cannot flow.
It gets stuck in the organs, all the organs,
whether it's your lungs, whether it's your heart, whether it's...
you know, you can imagine that's really debilitating.
If people who are in sickle cell crisis,
if they don't receive treatment soon enough, quick enough,
it can, unfortunately, eventually lead to their death.
It affects everyone differently.
I know people that have transfusions every week,
I know someone that's had her hip replaced.
People go out to the club and go out and party,
and they can be wearing short sleeves and shorts for example,
I can't do that because if I let the cold enter within me,
or kind of get a hold of my body, then I could have a crisis.
For me I generally just live my life the best I can.
It's an illness many people don't talk about,
it's often referred to as the silent disorder.
Growing up knowing that there's no-one that I could talk to with sickle cell
was probably one of the hardest points of my kind of sickle cell journey.
You start to kind of compare yourself to other people,
you think: 'Why am I not like them?'
It's worse, it kind of drains you, it makes you feel a little bit different.
We kind of close it in within ourselves,
because the majority of the time we're dealing with it alone,
so I think that's why I always used to find it so hard to speak about it.
I've been told like: 'I can't be your friend, just because of what you go through.'
'It's too much for me to see.' And I'm like: 'Huh.'
Having a child with sickle cell, I feel like our parents don't really talk about it
amongst themselves, other parents.
Because we see their behaviour we just feel like we should keep it to ourselves as well.
Know how Nigerians are, or African parents traditionally are?
It's kind of: 'You deal with it yourself.' Or: 'It stays within the family.'
Or, you know: 'You go church and pray through it.'
They help in some cases, but in other cases they hinder.
I personally just don't like talking about it,
but I'm learning to like change that because it's not good mentally
because you bring it all to yourself.
Even if I'm not always talking about my sickle cell with you guys,
I feel like just knowing that if I was like down
and I needed someone to speak to who fully gets it, you guys get it.
It's like a normal conversation, that's why I realised, I think the other day,
you know that long convo where we were talking about this and that.
In the group chat?
Yeah, in the group chat, and I was like: 'Wow, OK, maybe I'm not alone.'
I want to build a community around sickle cell
and the kind of long term goal in the future is:
Sickle cell patients really need blood.
It's one of the best therapies, especially when they're in crisis,
and to prevent them from going into crisis.
Your ethnic background matters when it comes to giving blood and receiving blood.
People with sickle cell from African and Caribbean backgrounds,
the best match is donors from African and Caribbean backgrounds.
There a number of different reasons why black people especially don't give blood.
I mean, it's a taboo subject, it's not talked about a lot.
They say: 'For religious reasons I don't give.'
Well actually, we know all the major churches, they say it is good to be a blood donor.
We got Femi, one of my close friends.
He has never donated blood before.
He's scared of needles,
and there's this fear that they're going to stick a massive needle in you.
It's not that.
I want to go with these people that are going, just to kind of make sure they're OK.
It's more like a hand-holding process.
[Nurse] Is he annoying you?
He's annoying, he is annoying.
Do you want me to go away?
No.
We only have 10, maybe 12, 15,000 black people giving blood.
That's 1%, it's just not enough.
We've got to up those numbers up to 40,000,
because people with sickle cell need blood.
For me, as long as a conversation is starting,
and people are thinking about it a lot more, then I've done something,
and I will continue to try and make sure that conversation is happening.