1 in 20 people with asthma have severe asthma

“I feel less isolated when I talk to people online going through similar experiences”

Julia Kerr, 29, talks about living with severe asthma and how she’s found support online

“Life with severe asthma is limiting. There’s no spontaneity because everything I do is timed by when I need to use my nebulisers, and I’m always planning ahead. I have a wide range of triggers – dust mites, tree moulds, pollen, temperature changes, exercise, smoke, and rapeseed – so I’m very organised when it comes to my managing my asthma. Whenever I go out I need to make sure I take my asthma medicines half an hour beforehand." 

Getting a diagnosis 

Julia Kerr in Asthma UK Tshirt

"I was nine when I was diagnosed with severe asthma, and it started with an asthma attack. I was at a family party in a restaurant where people were smoking. The smoke must have triggered my asthma because I didn’t feel my usual self - my breaths were very shallow and laboured and I felt lethargic. Although I wasn’t wheezing or coughing - it turns out I have ‘silent’ asthma symptoms - when we got home my mum was so worried that she called a doctor. When the doctor saw me he called 999 straight away and I was rushed to hospital. 

"In hospital it was a whirlwind of tests, which was really scary and confusing - especially as it was past my bedtime and I wasn’t feeling well. I was diagnosed with asthma and sent home with steroids and inhalers the next morning. Less than a month later I was seen by a consultant and he knew that my asthma was more serious. I was diagnosed with severe asthma within my first three appointments with a specialist - roughly about four weeks apart."

Growing up with severe asthma

"Up until my diagnosis I didn’t know I had asthma. I used to be really active, although I would get out of breath quicker than other children. My older brother has asthma so my mum recognised my symptoms from a young age – around the time I started school. She mentioned them to the nurse at one of my brother’s asthma reviews, but my peak flow readings were fine. Even now I perform well on the peak flow test. 

"After my asthma diagnosis I felt very isolated, especially in school. The teachers just left me to deal with my asthma on my own and I remember once I had a bad attack but they didn’t call an ambulance. When my mum arrived she was angry, but the teachers said they didn’t know what to do as they’d never come across a child with asthma so bad before. Mum called 999 and gave me Ventolin while we waited for the ambulance. In hospital I was told I was lucky to survive. I was rushed to hospital several more times after this and the teachers just sent me off in an ambulance on my own.

"At secondary school things didn’t improve. Once when I had chest pains and was feeling clammy, the teachers wouldn’t call a taxi to send me home so I had to walk. I was also made to do some of my lessons in isolation because the teachers were worried climbing the stairs to class would trigger my asthma – even though I told them I was fine to take them. I wasn’t even allowed to go on the end of year trip to a theme park because of insurance issues, even though by this point I was better at managing my asthma and knew what to do if I started getting symptoms."

Learning to juggle my asthma medicines 

"I’ve tried lots of asthma medicines over the years. I was on Xolair a few years ago but it didn’t suit me. It’s really difficult finding treatments that work well, but I use a nebuliser every day and take steroids. In total I take 15 different medications every day.

"I’ve created a chart on my computer to help me stay organised with my asthma medicines. I have a few that need to be taken at certain times or separately, but my chart helps me to keep track of what doses I need and when to take them. It also includes lists of my allergies and my medical conditions. I’m always updating it and printing it off so I can give it to other people and take it with me to every asthma review or hospital appointment. I also keep a few copies in my bag in case of an emergency.

"If I have an asthma attack when I’m out on my own and need to call an ambulance, the paramedics can find my chart easily when looking for my ID. This means they have all the information they need, without me having to explain it to them between gasps."

Finding support online

"Because I had so much time off school I found it difficult making friends. I’ve only got one friend from secondary school, so I get a lot of support from people online who have similar health conditions as me.

"I feel less isolated when I’m in touch with people going through similar experiences, especially if I’m stuck indoors or in hospital because my asthma is so bad. I’ve found the Asthma UK Facebook page really useful for connecting with other people who have asthma, and for checking the weather and pollution forecasts."

Fundraising for Asthma UK

“I really enjoy fundraising for Asthma UK.  I’m limited in what I can do because of my health problems but I just work around them. I’ve done raffles, online auctions and recently held a fundraiser in a hall where we sold cakes and played tombola and games, including ‘Guess the name of the teddy’. 

“One of the main reasons I fundraise is to raise awareness of Asthma UK and help the charity to reach out to more people and fund research for finding new treatments - especially for difficult to treat patients like me. I want to give back to Asthma UK because I get so much from them.” 

Last updated October 2016

Next review due October 2019