Yeah. Well I always have to you know, tell them what sickle cell was and was about that. I never told them until I had the attack. Maybe if they brought it up and don’t know how it will come up in a conversation but maybe if it came up in a conversation then I would tell them about it. But they never really knew and understood until I had the attack. So maybe you know, I’ll have an attack and they’ll be, ‘Oh what, what happened, what went on? I thought you was dying and. Then I’ll say ‘No I have a, I have a disease called sickle cell. ‘What’s sickle cell? What’s sickle cell?’ And I’d tell them that there’s something wrong with my blood cells and they’d be. ‘Ok then’ I always had to just, always had to describe what sickle cell was, always.

So they are curious. Are young people in general curious about it or has anybody or anyone been unkind to you or?

No. No. When I talk about sickle cell I’ve never been, you know, treated in a horrible way because of sickle cell. No way. People are always kind. And yeah they feel it, they feel for me. You know they’re, yeah. But yeah they’ve never been horrible to me because I’ve sickle cell, never. Yeah if I’ve an attack they’d help me. Sometimes my friends even help me.

You know when I was in high school and stuff they’d be like, ‘Misha you know that you can’t do this so don’t do it. And ok then. So they’ll all definitely, definitely help. Yeah. They are all good. They are very supportive as well. Yeah for people that don’t know about sickle cell and don’t know how it feels but they still support you and you know, encourage you when you’re saying that. You can’t do this so don’t do it. Use wisdom. It was good, it was really nice.

My brother and I, my younger brother he has sickle cell and my mum. But his twin [names] she doesn’t’ have sickle cell. She’s the only one that doesn’t have sickle cell.

Do you talk to your brother about it? Do you explain to him what he needs to do and?

Yeah knows what he needs to do. Yeah he’s 14 so he knows what’s going on and how to control it. At times it does hurt a lot so it’s like, ‘Oh I’m going to die and the pain is too much. I just wish I was, like I was dead and. But sometimes he, you know, you just have to encourage yourself and say, ‘It’s going to work and just try and help yourself. Yeah.

How was it when you were sort of growing up because with several members of your family having sickle cell and perhaps if you feel ill and have to go to hospital and.

If someone else.

Yeah.

Yeah like my brother or my mum. She doesn’t really. When my mum has attacks it doesn’t, it’s not noticeable. She could be cooking, cleaning and driving up and down and then we’d be like ‘Yeah. And she’d be like, ‘I’ve got an attack in my shoulder or my chest. And we’d be like, ‘Oh ok we didn’t know that. She doesn’t really dwell upon it. But with my brother obviously because he’s younger he’ll go to a hospital and it feels, you just want to take the pain away. Like you just want to do it yourself. You’d rather have it upon you than him. I don’t know probably because he’s younger and it seems to hang on and on. Like he does, it. Sometimes it makes you cry ’cause the pain. And you look, because you know how the pain feels and what he’s going through. Its like, ‘Oh. You just can’t handle it so you just want to take the pain away.

Ok. So you feel for him?

Yeah definitely feel for him.

When, how is he managing at the moment?

Oh he’s fine now. He hasn’t had attack, he hasn’t an attack for about two, three months. Three months. But before that he hadn’t had an attack for like a year. But now it’s getting to winter and everything it’s. We have to wrap up [ha].

Ok. So you, you and your brother and your mother participate in support groups.

And my sister.

And your sister too.

Yes. Even though she hasn’t, she doesn’t have it but she comes along to the meetings and stuff. And now that she comes along like even though she don’t have it but she comes along to the meetings. It gives her more knowledge about, about sickle cell. So she, if we have an, an attack and we’re not really thinking straight then she knows that, ‘Misha you have to do this to get better. And I’d be like if I’d have an attack. Because sometimes when you have an attack it’s like some times you don’t really think straight ’cause it’s, you’re in so much pain that you just don’t give a damn. You just want to, you know, just do something to make the pain go away and stuff. And so it’s good to have like my sister there even though she doesn’t have sickle cell to say, ‘Misha you need to do this. At the time you think, ‘Oh shut up man you don’t know what sickle cell feels like so how can you tell me to do this. But when you humble yourself and you do it and it does, you realise that it does help. And you say thank, I say ‘Thank you for helping me and.

What does she need to do when you have an attack?

Like I might have an attack and she’ll be like. She’ll get me diffe

Yeah I’d just like to, you know, encourage you and say that just because you have sickle cell doesn’t mean that you’re not normal. Do you understand. It’s like we are, we are different yeah but privileged in a way to say that we have sickle cell and have an understanding and a different side to see things from. So that’s why I encourage you and keep going, you know, doing energetic things. Keep on you know.

Keep and, yeah just keep doing energetic things and you know, it’s not like you’ll be restricted from things. But say like, but maybe you know, just use wisdom but be encouraged just to know that you’re different but it’s a good thing. It’s a very good thing and don’t look down upon yourself. Don’t condemn yourself. And you know go out there and be what you want to be [laugh].

What do you think has helped?

My mum. She’s, I don’t know ’cause she was brought up in Liverpool and they were very strict with her and they just told her to get on with anything. Do you know? So when we have an attack sometimes it does help when she says, ‘No come on, get up. Do some stretches. Go to the shop for me.

And you think, ‘Oh my days what is this woman putting me through like. I’ve got like a big pain in my chest and she wants me to go to the shop. But it does help. It definitely helps with, without a doubt, without a doubt. Yeah. And so when we have attacks, maybe she might let us off for the first week, first two weeks or the first, first week and when it gets to the second or third week then she’s like, ‘Oh go to the shop for me. Get up, do some stretching. Otherwise if you’re just sitting there and you’re just lying there watching TV all day your body will get stiff and won’t be able to move. So yeah even though it takes you like two hours to walk to the shop and back because your legs are in pain and you’re thinking that you’re going to die but it helps a lot, it helps a lot.

I haven’t really, haven’t really been to the adult’s one yet. I’ve got an appointment on the 24th of January and I’ll be in the adults one then. But in the kids one yeah it’s alright really. It’s alright. They just tell you more. They just tell you more about even more information. Tell you that’s going to be ok but you must take your medication.

And in terms of, do you see the same team every time you go to the hospital?

Yeah the same team.

How important is that?

Well it’s like, if you don’t see the same team it’s like they will give you all different information. One might be saying, ‘Oh you take this, take that but I will not allow you to take four of these. And so you get muddled up so that it is very important to see the same person because they can keep record of how you’ve been. And how many, have you been in hospital this year and if you’re taking your medication, if you’ve lost weight, yeah or if you’ve shrunk or you’ve gone taller and yeah.

How do you think they communicate with you? Do they, are they friendly? Do they use a language that you understand or do they use big words that you?

No they use a lot of language I can understand. They communicate, their communication is, is very friendly like. They will tell you the facts and they won’t be like, oh they won’t be wishy washy. They will just tell you what’s happening. Tell you what you should do and. They’re not, they don’t really hide anything or do anything that shouldn’t be done or.

I think it’s a good service. It’s a really good service. Just have more understanding on like what it is really. It’s really good because they are very friendly, not like they’re not friendly. And they really do want to help you even though at the time it feels like they want to kill you and they just don’t want, they don’t like you, they just want to stab you with needles but [ha] they do want to help you [laugh]. Yeah so yeah I think it’s good. I just think they should, yeah it’s good.

Tell them everything, like the doctors and nurses and don’t hide anything from them, away from the children with sickle cell. They might be young but just tell them what’s going on and how things are and what’s going to be happening and keep them up-to-date.

And you know, maybe like with me ’cause I never got any information on children and so my mum had to tell me about it. If they know information about if they have, if they get older and they’re having children what the effects will be. Like what effects will they have. ‘Cause I’d just give them as much information as you can and be supportive and just yeah, that’s it really. Just keep them up-to-date and tell them what’s happening, what’s going on and then they’ll be alright.

Yeah like when I had exams like my GCSEs I wouldn’t be able to be in the school hall because the school hall was very, very cold. So they were so protective that, that they didn’t let me go in the school hall. They, I have to go in a different room to do my, take my exams, like in a warmer space because the drama hall was very, very cold. Yeah. And in high school I could wear, I could wear sports trousers like jogging bottoms ’cause it was warmer than school trousers, they was thicker which I could wear them with my trainers. So I had an advantage and yeah.

Have they been supportive?

Yeah very supportive at times. They actually they have been very supportive, not the college that I’m in now but when I was in high school, I mean secondary school. The, I had like a personal assistant at the side. Her name was [name] and, any time that I would have an attack then she would, you know call the ambulance. I would go to the office myself or someone would drag me or pick me up and take me to the office. And they should call the ambulances and then or go to the doctors and my mum will meet me. I’d go to hospital and then my mum meet me at the hospital and [name] would be there throughout maybe like for the whole day with me and I just thank god for her there because she was very, very, she was so kind. She was sweet and she was there for me. It was just like, she never knew what sickle cell was like. She was just like, she didn’t like seeing me in pain and she would you know, she’d just be there and just she used to be there for like the day helping me and sometimes I’d be asleep and then I wake up and she’s still there and she was very, very nice. She was very, very supportive and she helped me.

This was when you were in high school?

Yeah.

In primary school I never really, actually I had, I never had a lot of attacks, not really.

No?

Not as much as my secondary school. ‘Cause when you’re in secondary school you think that, ‘I’m big now. And I can do a lot of things and you have so much energy. You want to go do, go here. You want to go there. You want to do this. You want to do that. You just want to experiment when you’re from, from eleven to sixteen you just want to experiment and do a lot of things and stuff. But in primary school I never had that much attacks. Like I was loud in primary school but quiet as well. I wasn’t really. I didn’t really have too much attacks there. Yeah.

Did you or have you ever felt different to other kids because of your sickle cell?

Yeah. I remember a time when we went on a school excursion or should I say trip, we went on a trip. We was there for about five days to Swanage. And then I had to take my medication in the morning and at night. And there was like, ‘Oh why you take so much tablets?’ And I was just, ‘Because of my sickle cell. I explained to them. But I remember couldn’t go to swim, I couldn’t go swimming in the sea either ’cause it was really cold and it was during the winter that we went on the trip so I couldn’t go in the sea. So I had to stay in the cabins and, and they were just, they were quite surprised actually. Yeah. And I mean it, it does make you feel different, sometimes special at times but not really special. Yeah.

Special in which way?

‘Cause sometimes, if some people feel sorry for you and then they, you know, do things for you and make you feel a bit better with yourself and stuff.

What does it mean, normal, to you? What do you mean?

Normal is just like you don’t have any worries and. I know people have worries but I’m talking about in sickness and in health like we don’t have cancer or you don’t have sickle cell, you don’t have asthma. You just maybe you might have a weight problem or something but that’s normal, do you understand. People are fat, people are thin, people are slender. It’s like but normal you just don’t have anything. You’re just there. You can do what you want. You can go swimming in the winter. You can, in the winter you can wear a T-shirt. You know, you might be cold yeah but you won’t, nothing will happen to you. You might get a little cold and a sniffle but that’s not really anything compared to sickle cell and cancer and stuff.

And then when I was at school and in school I was restricted from a lot of things. Going out with my friends and stuff and that I, I couldn’t drink even though I don’t want to drink but you know, I’ve tried like a drink or so but it has, it did have, it gave me a sickle-cell attack in the chest and it was very, very bad. I had it for like. I had the attack for, or the pain for about two weeks, two, three weeks with the pain.

And this was after you drank alcohol?

Yeah after I drank alcohol so I’ve never drank since. I don’t really like it anyway. My… In high school a lot of my friends really liked sports either if it was gymnastics or to football or trampolining or something. I like sports as well but I had to, you know, restrain myself from a lot of it. Yeah so. Yeah I liked football as well because I was a tomboy in the high school and I liked football and everything. And I wanted to be in the boy’s side but I wasn’t allowed to because of the sickle cell. And it was very scared about if I had an attack or something. Yeah so.

And tell me about that episode when you drank alcohol?

Yeah. Well it was my friend’s birthday and we went out to go see a brother, friend. We gathered together. Put our money together and we knew we were going to have a good time. So we bought some vodka like, more about ok. About a bottle this big for ourselves each. So we had a bottle and we were having a good time and everyone was just like, ‘Ok I dare you to drink the whole bottle in 10 seconds’ or something like that or in a certain amount of time. I was thinking alright then I’ve got to do this. So I was like ‘Ready. And then I drank it, drank it, drank it and I felt sick after. I just threw the bottle into the, the railway of the train and stuff. And thinking, ‘Right then I did it. Like yeah, well done, well done.

And after a while it was just, it was outside as well, I was on the street. So I had the vodka and then I had the, I was outside as well to make it even worse. And then after about an hour and a half we were just, you know sitting down, just talking about an hour and a half. I had this big, deep, sharp pain in my chest and all around my stomach. I was thinking, ‘What is this? What is?’ I thought I was going to die. And we was outside, it was just like at the train station and I, I seriously thought I was going to die and I just fell on the floor and I was like, I was screaming and screaming and my friends were like, ‘Oh Misha what’s, what’s going on? What’s wrong?’ And I was like, ‘It’s a sickle cell attack, it’s a sickle cell attack.

And because they’d never been there when I’ve had an attack they were so scared. They were going to ring the ambulance and everything. And so it was like, ‘What, what shall we do?’ I said, ‘Let me just go home, let me just go home. So we had to travel on a train and on a bus and while I was on the bus I was still screaming and I was praying that, ‘Oh god just take this pain off of me right now. People on the bus just thought I was crazy. They thought I was possibly going through labour or something. And we got to the girls house and I just went to the, we went to sleep. You know she told me to eat something first because it’s like well you don’t really eat something then you haven’t got the strength to, you know, encourage yourself and say, ‘Hey this pain can go, this pain can go. And we had all. And then she made me a hot drink as well.

But during the night I was tossing and turning. You like, it takes you hours upon hours to get to sleep because the pain is just so much that you, you just can’t, you can’t sleep. So I went to sleep about, like we got

Based on the experience of you and other young people that you have, that you know with sickle cell what do you think are the main problems or difficulties for young people?

With sickle cell?

Yeah.

The main problems? Just doing things that, that you would like to do. Like you just sometimes you just want to do what you want to do. Just I feel like doing this today so I want to do it. As a teenager that’s what you feel sometimes. You think you know, I just want to do this so why can’t I do it. But you can’t [laugh] do that when you have sickle cell you don’t, you need to be wise and you just need to. Yeah it’s that’s one of the main problems like if my, if my friend’s doing this then why can’t I do it. I’m the same as them but I just have something else and thus I think that’s the problem sometimes.

Yeah because for some teenagers it must be difficult to, to grab that and to understand.

Yeah. At some time, sometimes it’s not, for some reason like teenagers they just want to smoke. They just want to smoke. Like I’m bad ’cause I’m smoking, yeah can you understand. So some sickle cell people always want to, some people with sickle cell they just want to smoke because they’re friends are smoking and. I haven’t really smoked like you know I’ve had a cigarette but I have tried it one time and it’s not nice [laugh]. But there’s.

When I was in Year 9 or Year 10 or something I had like an Older. And like the Older is like a friend and they will help you in times of need and troubles and maybe if you have a, if you had a fight with your friend then he will come and help you and you know, be a person for you and give a quick view of certain tools and stuff. And at that age I was getting quite bad and I wasn’t really focusing on anything. Like I wasn’t going to school sometimes and this Older he used to smoke and he would like, I would smoke with him sometimes but after a while it just gets to the chest. So smoking and drinking is like, them two things they’re not on my side. I hate them. Yeah. Even when like if someone’s smoking and I’ll walk past them it just gets to me. I just want to get, ‘Oh gosh’ It’s just like. But them two things I’ve had experiences with them and it’s not good don’t think. I hate them. So sometimes when you’re a teenager you just want to do what you want to do. If you can try and do what you want to do but you’ll see that the more, the more you do what you want to do the more sickle cell attacks will come. You have to be wise and know I can’t do this and I can’t do that. So I’ll do this instead.

Do you take part in any support group for young people with sickle cell?

Yeah we have a sickle cell group in [town] and there’ll. There’s about ‘on a normal weekend there’s about fifteen of us and but when it comes to parties and everything and there’s about 45 or else 45/50. There are 45 of us so yeah it’s usually around the meetings. We have meetings every two months or something, every two months and we get together. The adults have their one and, and the youth we have our one and we watch videos and talk about sickle cell and just talk about how long they haven’t had an attack for and play games. Yeah watch movies, playing Play Station and just have fun basically being together in unity.

Ok what do you talk when because you said, we talk about sickle cell but what in particular do you talk about?

Just talk about, you know, mostly that where, where’s the pains where we most get it. At where, like where does it come the most and stuff. And why do you think it comes there the most. And then just how much time we’ve had a sickle cell in this year like a sickle cell attack like in the whole year and. Where, what the blood cells do when, you know, we have an attack. And they told us that when we have an attack basically the blood cells because they’re not round they’re circular, like a banana shape they get clogged up and they can’t go through the system. So it’s like if those were round then they’ll just flow through, they’ll just flow through. But because they’re a banana shape you know they get stuck in each other and it just blotches up and then that’s when an attack comes. So it’s just in your leg and ’cause there all blood cells are just in one place then it just starts a pain. And they just tell, they just talk about that and stuff like that basically. Yeah.

Yeah it’s good to have other people, you know, they’re your friends and they’ve got sickle cell as well. It’s like for some reason you just feel closer to them. You feel like yeah we’ve got the same thing and yeah we’re always striving to, you know, just don’t have as much sickle cell attacks as we can. Do you understand them. We wish, it’s feels like someone is on your side. But we can all do it you understand. It’s sometimes they look normal. They look normal so I think if they look normal, I can look normal. You know and we don’t have to go through as much pain as we, as we do. So.

Ok so what are the things you need to do in order to, to help yourself and your condition?

Take medication and to wear a lot of warm clothes. But I don’t really like wearing jackets and all that but I have to get used to it because when I didn’t wear jackets and I got the attacks, you understand. But yeah I had to wear jumpers and you know, another jumper under that and you know, two pairs of trousers and thermals. Oh dear, a lot of warm clothing, yeah.

Do you remember how old you were when you started to understand what you needed to do and why you were doing it?

About 14 or yeah about 14, 13 I could control it a bit, you understand ’cause it’s like I was having sickle cell attacks and I had the sickle cell attacks and I would just think, ‘Oh it’s an attack. But when I got to 13 and 14 I was realising that it didn’t have, it doesn’t have to come as often as it does. So I wear warm clothing and it, and even if I did get the attack I will try and control it and try and think of something else so I don’t dwell upon the pain so it wouldn’t come as much or it wouldn’t, you know. Yes then it wouldn’t really affect me that much if I didn’t concentrate on it. Then it would just…

Oh it has definitely changed, definitely because I’m aware. I just feel that I can control it. When I was younger I couldn’t control it at all. It would just come and I’d be there for two, three weeks in pain but now when it comes it’s like, ‘Oh it’s an attack. I mean I could, I could get up and I could cook. You understand but when I was younger I would be in hospital having all these needles but now if I had an attack in my leg or I’d just get up put some hot water on it or have a painkiller and then I would go and maybe sweep the floor or help the twins their homework. Like it doesn’t. It comes to mind at times and even though the pain is there I just get on with what I’m doing but before I couldn’t do that.

Apart from wrapping up and taking your medication what else do you need to do?

What to, to prevent ourselves from getting sickle cell. Just be wise basically. Just be wise, yeah. Maybe we could go swimming and the next week go swimming. But you have then, you have to realise that, ‘Ok I can go this week but I can’t go next week because if I go twice in a row and it’s quite cold then you know that you’ll get an attack. So just be wise with your thinking, in terms of when you do things.

When you have an attack, how long does it last?

The attacks, they can last for two weeks, two, three weeks in that, in the same pain.

What do you think has helped?

My mum. She’s, I don’t know ’cause she was brought up in Liverpool and they were very strict with her and they just told her to get on with anything. Do you know? So when we have an attack sometimes it does help when she says, ‘No come on, [clap] get up. Do some stretches. Go to the shop for me.

And you think, ‘Oh my days what is this woman putting me through like. I’ve got like a big pain in my chest and she wants me to go to the shop. But it does help. It definitely helps with, without a doubt, without a doubt. Yeah. And so when we have attacks, maybe she might let us off for the first week, first two weeks or the first, first week and when it gets to the second or third week then she’s like, ‘Oh go to the shop for me. Get up, do some stretching. Otherwise if you’re just sitting there and you’re just lying there watching TV all day your body will get stiff and won’t be able to move. So ye