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 hes grown up with it. It has not really restricted his life and he is a professional rugby player. [Text only]
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.
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.
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 found 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.
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.
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’s young child has been in and out of hospital with her asthma and it has taken its toll on their family life.
Memories from the 50s and 60s
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.
Jan remembers the doctor visiting frequently at home to administer injections, and feeling quite frightened when she had asthma attacks
Belinda described being sent away in the 1960s 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]
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.
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 which 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.
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.