People don't understand the pain, it's, the pain when you have a crisis is so bad.
As a child I was always ill, couldn't walk, I didn't know what it was. I remember going to one
hospital and they basically told me I needed to exercise my legs, that's why they were hurting.
And they put these metal things and my legs were on these weight things being pulled up,
now imagine if I'm in so much pain and you're giving me more pain like you're
dragging my legs up and saying they need to be exercised and that was the treatment I had.
I love dressing little bits that's just me it's something I always do.
So, I think people with sickle cell tend to do that, you focus more,
I tend to focus on my feet a lot because that's where I have pain.
So, we're going to City Hospital my treatment, which takes a couple of hours.
Nice weather and going for the treatment so double bonus.
I think I got to about 15 when mum says, 'you know enough of this we need to find out what's
really going on with you, what's something called sickle cell?' that was the end of.
There weren't any treatments whatsoever. Struggled through school because I was always ill.
We found a great parking space after years, it's nearer to where I have to go.
Hi Loury,
Hello my dear.
How are you?
So, we are here again.
Are you doing me today?
Ckay.
I'm going to look after you today.
Thank you.
Now we there.
Thank you.
Now we just have to wait for the treatment to come in they'll bring over from Sandwell.
1999 hydroxy carbamide came out and my doctor we decided to put me on that,
which it really helped, but it's a lot of side effects that was the only drug.
The top ones for us?
The top ones for you, and I got the other underneath.
Let's have a look.
It's all in there.
Expires tomorrow 23.
And then in 2021 last November I heard they had a new drug crizanlizumab and I thought,
wow okay, this and this was the first drug since hydroxy carbamide in 20 years.
I had the call to say yes, I was going to be having it and I was
going to be one of the first in the UK to have that drug.
All done, yeah.
Yeah.
[Thank you so much for that, okay bye.]
Crisis wise I've had one crisis and that was in March and it's only lasted five days
normally my crises last 10 to 14 days
and, this is not me, everybody else who's on the drug has reported that we have the pain starting
and it's always starts my legs, you so you get the pain starting, like you feel that cutting
pain into your leg and it lasts five minutes and disappears and that can only be the drug. I'm not
the only one reporting that and that is excellent. You just wait for it because your life has been
pain, pain, that particular pain and you're just waiting for it to start off and when it
starts like thing in the leg and then it stops you think wow. It's life-changing, lifted, totally,
you know you're going to be okay, yeah, yeah. What's that? It's hard to describe
because emotions come with it as well.
I can't believe you're actually at this point where something is actually happening that's
helping you and I think that's all I can explain to us it's difficult because it's been so long,
I mean in my 60s, so it's been so long to wait for something and it's here
and it's working.