A-Z

Asthma

Childhood onset of asthma

Asthma is a condition which can start in childhood or in adulthood. Although we only talked to adults about their asthma, some told us that asthma had been part of their lives since childhood, to varying degrees and with varying impact. Here we look specifically at these experiences of childhood onset asthma.

Improved treatment and greater awareness about asthma means that schools are now more used to supporting children with asthma. We found noticeable differences in experience between those who were diagnosed decades ago and those more recently.

 

John was diagnosed with mild asthma when he was 10 (13 years ago) and says it’s become second nature to him as he’s grown up with it. It has not really restricted his life and he is a professional rugby player. [Text only]

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John was diagnosed with mild asthma when he was 10 (13 years ago) and says it’s become second nature to him as he’s grown up with it. It has not really restricted his life and he is a professional rugby player. [Text only]

Age at interview: 23
Sex: Male
Age at diagnosis: 10
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It was round when I was about ten, I was playing sport. I used to play a lot of sport when I was younger. I still do now. And mainly I found I was getting out of breath really easily. And I didn’t feel as if I was any less fit, than other kids and I did as much as them, so it didn’t really add up …..And my Dad had asthma, my granddad had asthma. So it’s more. There’s a family link, so it’s quite an obvious answer to the problem that I had.

And so I got it checked out, found out I had asthma. This was when I was pretty young, so I don’t remember too much about it. But I found, I found when I had a break from sport or whatever I was doing for a specific period and went back to it, I was struggling a lot more than everyone else. So the….. Initially when I was to go back to it, I found it hard to breathe, hard to breathe, and just, just wasn’t able to keep up really. And then after that I think once you get into it, and once your body does adjust even with the inhaler, you get used to it and you find yourself being able to sort of compete with everyone else, being as fit as everyone else. So in a sense asthma hasn’t restricted me that much. It’s only the initial stages, and knowing how to take care of it.
 

Lisa was diagnosed aged 12. The asthma nurse gave her a DVD which helped because she could see other children talking about having asthma. It helped her to get used to the idea.

Lisa was diagnosed aged 12. The asthma nurse gave her a DVD which helped because she could see other children talking about having asthma. It helped her to get used to the idea.

Age at interview: 23
Sex: Female
Age at diagnosis: 11
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Yeah, I was in my last year of primary school, and I just remember really being out of breath quite a lot at PE and my mum brought me to the doctor, and they tested me or, you know, checked me, my peak flow, and then was just diagnosed then. So it was around, I suppose, September 1998 before I started secondary school, just.

So you were about eleven.

Yeah.

And how did you feel when you were told?

I wasn’t really too sure what asthma was. I just knew I couldn’t breathe properly [laughs]. That was really it until it was just when I got older, and went in the secondary school and more people had it, and I realised, you know, that it was actually quite dangerous but I think then I panicked a bit more but, you know, when I was first diagnosed it didn’t really didn’t really annoy me [laughs].

Okay and were you told at the time what it was?

Yeah, the nurse one of the nurses, you know, explained what it was, but when you’re when you’re young, you know, it was in one ear and out the other, but yeah, she said, the nurse like explained it in quite a lot of detail.

And gave me pictures and a wee DVD or video of what it was, and different children with asthma and...

So was it sort of children talking about asthma and telling you what it was like?

Yeah.

Right.

And it was, you know, it was just showing the different activities where your asthma could affect you. It was showing…

Okay.

Say children playing football or like skipping, stuff like that.

Sort of physical exercise and…

Yeah.

...activities. Yeah. And was it good to have other children telling you about what it was like?

Yeah, ‘cause, you know, if they’re if they’re a similar age, it’s easier for you to understand than, you know, a nurse telling you but, yeah, it was it was a lot easier for me to like understand and to say, “Oh, well, that’s exactly what it is.” Instead of just saying, you know, what I’ve been told, actually understanding was, so easier for me.

And so did the children on the video talk about it then?

Yeah, talked they just talked about how often their asthma affects them and if it, you know, other family members had it, just stuff like that.

Yeah. Okay, and so at that time, what, yeah, what kind of things did the nurse tell about what asthma was?

She just said that it was a condition to do with your breathing and she just really said that sometimes if I feel a bit tight in my chest, that’s when I should be taking an inhaler and explained why I was taking my inhaler, you know, and just that was really it.
Some people said that because they had had asthma for as long as they could remember it had become something they hardly thought about, although that could depend on the severity and frequency of symptoms. Catherine who was diagnosed as a child felt it might be easier to come to terms with asthma as a young person rather than dealing with diagnosis as an adult.

Asthma symptoms may vary over time; some people may find it gets worse as they grow older, whereas others may improve or ‘grow out of it’ and only rarely need to use a reliever inhaler when symptoms appear.
 

Faisil describes how asthma affected him as a child, and how it improved in his teens. More recently he has had problems again, which may be from living in a more polluted atmosphere.

Faisil describes how asthma affected him as a child, and how it improved in his teens. More recently he has had problems again, which may be from living in a more polluted atmosphere.

Age at interview: 33
Sex: Male
Age at diagnosis: 3
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As a child it was actually quite bad. I mean my Mum was, my Mum said that you were sort of looking at it was almost like a regular thing of asthma attacks. So I remember going to hospital quite a lot, and seeing a specialist there and bits of it in and out of A & E quite a bit. Emergency doctors being called out so up until I was about may be starting primary school it was almost a regular thing.

As I got older obviously it sort of gets better, up until I was about ten, I was quite sort of unsettled, so it was a lot of medication, a lot of trips to the doctors. After I was ten, sort of becoming a teenager things started to improve after that. I noticed the symptoms a lot less. I found it easier to do things like sports, which I struggled to do at primary school for example. Things seemed to be quite settled throughout most of my teens into my twenties and stuff. Then I sorted of noticed things getting a bit bad again after sort of about five or six years ago. I moved from [city] to [city] and I don’t know if it was the amount of pollution in the air or something, but it started becoming quite unsettled in the last couple of years again.

What was it like as a child having asthma? How did it feel for you?

I remember it being sort of annoying. Wheezing all the time. I can just remember always having a cold as well. And I think that’s one of the sort of, you’re prone to these things. So I was always having a cold or being wheezy all the time. Sort of annoying when you can’t run around with your friends and stuff. So sports wasn’t a great thing which… a little bit annoying because you sort of got a bit of stick for it when you were at school, you know, you can’t play sorts like the rest of the boys. So you go a bit of, you know, a real boy kind of thing, so that was a bit annoying that way.

How did you deal with that?
 

I tried for example, I couldn’t play football because I just couldn’t run, running especially as a child used to set my asthma of. It seems to as an adult it’s not such a big problem anymore. I tried finding other sports to do. One of the strangest ones was living in Scotland and not playing football and instead liking cricket, that was like the worst thing you could do [laughs]. So, you know, trying and finding a way round it.
Although asthma is now better understood, some said that as children they tended to use their inhalers in private rather than in front of people to avoid awkward questions or being seen as weak. Asthma can set young people apart from others their age – for example Asthma UK report - Missing Out 2009 said that 73% of children surveyed said that they had problems joining in PE lessons. Being unable to go to friends’ homes if they had pets was another common experience, and several people said other children can be cruel or thoughtless. Others too said their own set of friends had helped and supported them and understood their limitations. Developing alternative interests and hobbies, such as reading or chess, was a common strategy.

These days there may be several other children in school who also have asthma so it isn’t seen as particularly unusual. Current school guidelines are that every child should have their own labelled inhaler, and it is not generally permitted for a child to use another child’s inhaler of the same type, even in an emergency situation. It is important therefore for parents to make sure the school has an inhaler and that it is still within its use-by date. Asthma UK is campaigning for a change in these guidelines so that schools can keep a spare inhaler for any child with asthma to use in an emergency.
 

Esther thinks schools should be allowed to keep a spare reliever inhaler for children to use in an emergency.

Esther thinks schools should be allowed to keep a spare reliever inhaler for children to use in an emergency.

Age at interview: 41
Sex: Female
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The worst one I’ve had recently is with the primary school. They… she’d had a puffer, and she’d got the puffer that they had in the office, and she kept it in her pocket and she’d taken it home. And so they didn’t have one, so she was having an asthma attack. They phoned me up and I was at work last year, she was having an asthmatic attack, and they wouldn’t give her anybody else’s puffer, because it was illegal, and so she was having an asthma attack, and I was at work and I had to leave my work in a rush to get over to her school to give her puffer. All the time I knew, every moment’s delay I knew she was there [makes hard to breathe noise] not being able to breathe. It was absolutely horrendous and I just felt so cross that they couldn’t just. They had about ten or fifteen blue puffers in the cupboard, they couldn’t just, you know, give her a sneaky squirt of somebody else’s. ‘Oh no, it’s health and safety.’ I can’t tell you how annoying that is. They would watch somebody suffer in front of them. What if she had started turning blue with it? Given her one?

It’s a pity they can’t have a sort of a spare one, just for, in case anyone loses them or something.

It seemed a bit, I mean you obviously you can’t, I don’t blame the office staff, but at the same time I was furious that there was, there were ten or fifteen of those things there, just there, just sitting there, and if she could have had one it might have made her feel better. But no, can’t give it her, oh no, it’s not hers. So that was awful. And I kind of got the sack from that, because on a supply job, supply teaching, and they basically said don’t come back, because I’d left in a rush.
How far parents need to be involved in helping their children manage symptoms and take medication will vary according to the child’s age and how often or how badly they get symptoms. A key part of growing up with asthma is learning to control your own condition, which in turn means parents gradually handing over responsibility.

Some of the younger people we spoke to said that when they were children their parents would oversee their treatment and make sure they were using their medication regularly, but that when they became teenagers they had sometimes got into bad habits such as forgetting to use the preventer inhaler regularly and it could be more difficult to avoid triggers like smoke when they wanted to be able to go out and socialise with friends.
 

Tomas’ parents used to check how he took his medication, but now age 16 he takes responsibility for it himself.

Tomas’ parents used to check how he took his medication, but now age 16 he takes responsibility for it himself.

Age at interview: 16
Sex: Male
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Do you manage your own medication now?

Yeah now I do. I take care of it. Now I’ve realised my parents don’t even ask if I’ve taken it a lot now because I think they trust me to take it. And it’s just natural now. I just feel I get up and I have to take it. It’s just the natural thing for me to do.

Around what age did you start to manage?

Around fourteen, fifteen I think it was.

Can you tell me about that process of your parents handing it over to you so to speak?

Yeah. Well what, what they’ve done in the past was bring it all out for me and watch me take it and ask me if I’ve got my other pump on me just in case I need it. But since then I’ve, I‘m taking all my medication up with me. I take it when, when it’s needed and when I have to and they don’t bother me about it now. I can just get on with it and just, and they would just know I’ve done it anyway.
We talked to some people who were able to compare their own experience of childhood onset asthma and that of their children. Mark feels very protective of his children and worries about them, but also feels that having asthma himself gives him important insights to help manage things for them. He commented, ‘Years ago they didn’t have the facilities of things like tests and assessments…In those days people knew very little about the problem.’ Esther developed asthma in her 20s, but her daughter was diagnosed as a baby and has been very unwell at times in her life. (See ‘Relationships', 'family and friends’ and ‘Support’).
 

Esther’s young child has been in and out of hospital with her asthma and it has taken its toll on their family life.

Esther’s young child has been in and out of hospital with her asthma and it has taken its toll on their family life.

Age at interview: 41
Sex: Female
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And then, when she was eighteen months old she became asthmatic. She had some episodes where we were in hospital, and from then on my life wasn’t really my own. Because she would get, if she had a cold, or if the weather was really cold, she might get wheezy, and would just be able to do nothing but sit on my knee for days. And just have to go and have medicine and keep a little, but she kept getting wheezy and the doctors were getting quite cross saying, “Are you giving her the puffers properly? Are you doing this?” But we did have several instances. She was in hospital seven times I think in those years. And it was, I didn’t really get a full time job. I worked from home, and I kept working from home, but couldn’t go back to work because I knew that I wouldn’t be able to keep a job down, because at any minute the nightmare might begin where she would be poorly and I’d spend three days just looking after her, and not being able to think about anything else, let alone other responsibilities.
Memories from the 50’s and 60’s

Quite a few people who we talked to had been diagnosed with asthma during their childhood some years ago, and for some this brought back difficult memories. Asthma had made some of them feel different or even isolated from their peer group. Some remember having lots of time away from school and being unable to keep up with schoolwork. Medication was not as sophisticated as it is nowadays, and people remembered having to use cumbersome equipment, taking tablets, visits from the doctor at home, and having regular injections. Jane Y remembers when oral steroids first became available in the 1950s and says, ‘My mother and father thought, “Oh, this is a miracle drug”, because I had one tablet and I was just bouncing around.’ However, although Jane said it had been difficult having asthma when she was young, she also remembers her friends helping her carry her bags to and from school and walking slowly to be with her.
 

Christine who is 59 compares the medication of her childhood to current day inhalers.

Christine who is 59 compares the medication of her childhood to current day inhalers.

Age at interview: 59
Sex: Female
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The medication now is so much better than it was.

I was going to ask you what kind of medication were you prescribed at that time?

Oh, wonderful, I had ephedrine, which is kind of speed, really.

That was glorious because if you took too much, it gave you loads of energy. It didn’t last but it did give you lots of energy. And I had an inhaler which was … I can’t remember the name of it now, a big green thing, tasted revolting. But that was quite dangerous and you were able to, you could overdose on that inhaler and give yourself a heart attack. But the modern inhalers, it doesn’t work like that.

The steroid inhalers made a big difference.

I mean the Intal had got, the powder thing, had got a bit of steroid in it. But these are much more sophisticated. I mean the, the huge range of drugs for asthma now is impressive...

… so that your doctor can decide that, well, if you’re not managing on this one then we’ll try you on this one, and he’s got various things to, to go for.
 

Jan remembers the doctor visiting frequently at home to administer injections, and feeling quite frightened when she had asthma attacks

Jan remembers the doctor visiting frequently at home to administer injections, and feeling quite frightened when she had asthma attacks

Age at interview: 46
Sex: Female
Age at diagnosis: 4
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My memories are of missing quite a lot of education, in the, in the summer term. And of at that stage I was taking Intel inhalers. They were little sort of, I used to call it my filler, you used to have to pierce them and take the medicine through there.

The doctor came sometimes daily, but certainly I do remember being on injections three times a week, and the doctor would come in and administer … Obviously telephones were different in those days. I remember my Mum having to leave the house and run to the local phone box to get the doctor, so those types of memories were quite frightening.

It must have been quite tricky having medications and injections and things when you were a child?

Well it stops you being bad about injections as an adult, because they were just so much, you know, a part of what I did. I mean I obviously have the flu jab now because of my asthma and it just doesn’t bother me being injected. I suppose you just think you know, it’s what you have to do.

Can you remember how you actually felt during an attack when you were a kid?

Yes, one really, really strong memory comes to mind. We lived in, just like a normal three bed roomed semi, with a, you know, quite a sort of moderate drive where the car used to be parked. And there was a wall. And I remember being sat on that wall and just not being able to physically get as far as the door. And I just sat on that wall. I mean it felt like hours. It was quite a while I think. But it just felt like hours, and I just literally sat there until my Mum noticed me out the window. And it was just very frightening, just not being able to make that, you know, I just literally went out. I was only walking home from a friends. I just ran out of steam. And just couldn’t get my breath and I couldn’t walk.
Belinda described being sent away in the 1960’s to a special school for children with respiratory conditions; while it was good to be with other children who understood, it also heightened a sense of isolation and difference.
 

Belinda was sent to a ‘school for delicate children’ and remembers worrying that each breath could be her last. [AUDIO ONLY]

Belinda was sent to a ‘school for delicate children’ and remembers worrying that each breath could be her last. [AUDIO ONLY]

Age at interview: 53
Sex: Female
Age at diagnosis: 1
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It must have been strange as a child to know that you had a condition…

A life-threatening…

…that is life-threatening?

Yeah, because you’re aware that other kids didn’t have that and you were also aware that other kids had it, at different levels. To get to that boarding school you had to be quite acute, you know, chronically ill, it was actually called a ‘School for Delicate Children’ but I’d say 90% of us were asthmatics. Asthma is an absolutely awful condition because we all take breathing for granted until you can’t breathe. To not be able to breathe and actually it can also hurt, it so, [touches microphone] I’m so sorry, it can also be painful for your chest is terrifying, and you just sometimes think, “Well, if the next one doesn’t kill me the next one might. The next one after that might. I’m not enjoying life right now”. And my mate died in the holidays “I really wish this would end” because you’re also made aware that there’s no cure.

And the amount of times people, especially doctors in, insensitively would say, “Oh, you know, most kids grow out of this, you’ll have grown out of this of this by the time you’re, you’re 14 or 15”. And I thought, “Well, that’s bollocks for a start” [laughs] because you knew that, you know, there were kids in the school who were, you know, in there and 16 or 17 sometimes who were still really ill and they hadn’t grown out of it.
In mainstream schools too there had often been little sympathy or understanding from teachers about asthma and some children were made to feel as though they were making it up, making a fuss, or exaggerating their condition because they didn’t like sports.
 

Catherine, age 39 said her childhood was disrupted by her asthma and other conditions, and she remembers feeling isolated, bullied and left out of things. Nowadays her friends’ children know lots of people with asthma and it’s better understood.

Catherine, age 39 said her childhood was disrupted by her asthma and other conditions, and she remembers feeling isolated, bullied and left out of things. Nowadays her friends’ children know lots of people with asthma and it’s better understood.

Age at interview: 39
Sex: Female
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From the point that I was ten days old it became apparent to both my family and to the consultants at the hospital that I had numerous conditions but one of them was a lung problem. But obviously 39 years ago asthma wasn’t recognised as it is now and there wasn’t the experience with it. So it wasn’t until I was five that I got official confirmation that was the specific lung condition that I had, which I think gave enormous relief to my parents at the time because they were just floundering in the dark and being treated as hypochondriac parents. Obviously to myself it didn’t make a lot of difference at such a young age because I wasn’t aware of the implications of it and, and the effect it would have on my life. But as the years had gone on I think the impact has become quite apparent throughout school. At primary school it was a case of you couldn’t go outside and join in with PE because any severe physical activity would produce an asthma attack. The school had pets and a lot of the kind of outdoor lessons were sort of centred around the pet. But they set my asthma off so I was always kept separate, which of course lead to being labelled as different as a child. And then that always lead to bullying of course, which continued really throughout my whole childhood because I think back then I was quite rare. Whereas today my friend’s children, they’re in a class of 30 and half the class’ll have asthma. When I was little I was the only one in the whole school so nobody understood it...

Or understood why it kicked in, how it made you feel when it kicked in. Certainly as a teenager I became very conscious of having it because all you want to is fit in as a teenager and I couldn’t. PE lessons were hell.

Especially during winter anything like netball or hockey or cross-country, it was completely out of the question but the understanding wasn’t there, on the whole in the school. So you had to just try and do it and then of course you felt exceedingly ill. Very weak, you were always wheezing, then getting chest infections, because you were outside and with a poor immune system that would always make it worse. And school was hard. It was very hard. 
Some people who had severe asthma as children felt that their parents tended to be over protective and would not allow them to participate in normal everyday activities which left them feeling isolated from other children. But others remember the support they received from friends and family had helped them to continue to live as normal a life as possible. Looking back a few people we talked to felt they probably had asthma symptoms as children but were not diagnosed till later in life.
 

Tim remembers that his sister had severe asthma as a child, and their parents were very focused on caring for her. His own asthma wasn’t diagnosed until he was an adult.

Tim remembers that his sister had severe asthma as a child, and their parents were very focused on caring for her. His own asthma wasn’t diagnosed until he was an adult.

Age at interview: 63
Sex: Male
Age at diagnosis: 25
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Well I was never diagnosed as a child. I realised that I was breathless doing any kind of sport. I was hopeless at sport at school, but I assumed I was just no good at it. And it wasn’t until I was in my mid 20s, even my late 20s, when I had an Australian girlfriend. I was still living in England at the time. But she was a nurse and she picked it up immediately that this was what I had and bundled me into a doctor’s and had me diagnosed. And after that I was regularly treated for it. Before that I had no idea.

And what, when you were a child. You said that you had certain symptoms and you were feeling breathless when you did sport and that kind of thing. So how did you cope with that?

Well not very well, I was a complete failure at sport and considered that I must just be built that way I suppose. I had a sister who was very much worse affected than I and I think what must have happened is that her case overshadowed mine, and that my parents were so concerned about her that they didn’t actually notice that this was my problem.

Nobody at school picked it up either though which is a bit surprising. I suppose perhaps not so surprising for those days because we’re talking 50 years ago, but I just thought I was useless at sport.

And what kind of feelings did you have?
 
Oh tightness in the chest. Any kind of exercise, particularly at certain times of the year. High pollen season and so on I had the usual constriction of breathing in. It was difficult to breath. Every now and then I’d have an actual attack, or what I now recognise as an asthma attack. I think it’s quite astonishing that nobody noticed what it was.

I think my sister had an idea, because she had it herself and I did use her rather dangerous medication once or twice. Which worked, but still nobody seemed to pick it up as a chronic problem for me. And so I just sort of lived with it.
While the experience of asthma has changed since many of the people we talked to were children, these early experiences can affect how they feel about living with asthma and managing their condition.

(Also see ‘Adult onset’, ‘Early signs and symptoms’, ‘Asthma attack and emergencies’ and ‘Support and support groups’).

Last reviewed August 2017.
 

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