Patient spotlight: Ed Powell

This month, we spoke with Ed Powell, the newest member of the ELF Council about his story with bronchiectasis and the new ELF Youth Group.

Tell us a bit about yourself and your bronchiectasis journey.

My name is Ed, I am 16 years old and I live in Buckinghamshire, England.  Currently, I am in school studying biology, chemistry and maths. I was diagnosed with non-CF bronchiectasis at the age of 8 after first showing symptoms at 5 months old. It has not been an easy journey to the diagnosis, which is why I was pleased to be able to join the ELF Council in autumn 2023. With ELF and Child-BEAR-NET, I can make an impact and make sure other bronchiectasis patients don’t have a painful journey like ours.

How did you get involved with ELF?

I first got involved with ELF through my mother, Zena, who started working with ELF in 2019 as she wanted to find a way to advocate for people with my condition to make sure their symptoms didn’t go unnoticed. My mum has worked on a task force and now with the Child-BEAR-NET forming guidelines for my condition. I began working alongside my mum in 2021 and I have been able to do lots of cool things since like going to the international paediatric cough conference in Bergamo, Italy in 2022. I also appeared in a video at the adult bronchiectasis conference in 2023. ELF have given my mum and I so many opportunities that we would never have had otherwise.

Tell us a bit about the new ELF Youth Group and why it is important.

The ELF Youth Group is a group of young people aged 16-24 who are living with a variety of different respiratory conditions, from across Europe. We hope to advise the ELF Council on the areas that we think are important. We want to give young people a voice on their conditions and future treatments. We will review documents made by the ELF Council and Patient Advisory Groups to make sure that they reflect the experiences of young patients. It is also an opportunity for young people who suffer with lung conditions to communicate with each other. Lung conditions don’t just affect adults, lots of people are born with or develop lung conditions before becoming adults. And how we are treated is sometimes very different from an adult suffering with the same condition, so it’s important our views are heard and represented.

Do you have any advice for anyone considering getting involved with the ELF, particularly in this new Youth Group?

I would encourage anyone aged 16-24 suffering from a lung condition to take part in the ELF Youth Group and to not be scared to say something or question what something means, because at the end of the day everyone understanding and collaborating is going to be the best way that we can help others and ourselves to live full and active lives with these conditions.

Do you have anything else you would like to add?

I would just like to add that chronic cough, especially in children, should be taken seriously. I would also encourage anyone to try and take part in any research they can as the experiences from patients and parents are so valuable. We are actively looking for members to start the Youth Group. So, if you, or someone you know, would be interested in getting involved, please get in touch with the ELF office. You will make a massive difference and meet others. Remember, you are not alone!

To join the ELF Youth Group or find out more information, please contact us.

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