Living with hearing loss – Laura’s story
I’m Laura, I’m 36, and I was diagnosed with CF within a couple of days of being born. I’m the middle child – my sister’s a CF carrier and my brother isn’t. I’m married with a young son, and I work in advertising in the pharmaceutical industry.
Since being on Kaftrio (and now Alyftrek) my health has changed exponentially. It’s quite crazy really, how different things are, not least because I’m a mum, but also my health is that much more stable.
Developing hearing loss
My biggest challenge living with CF is my non-tuberculous mycobacteria (NTM) infection. I first grew it back in 2019, and I’ve been on intensive treatment ever since. I had a gap in the middle to have my son, which was a very nerve-wracking time and a huge risk that thankfully paid off.
It was during that treatment that the hearing loss started to develop. I think it was cumulative exposure to a specific type of antibiotic called aminoglycosides, for example tobramycin, gentamycin and amikacin. This exposure started way before NTM, though, as I was on regular IVs from when I was about 10 years old, once or twice a year.
My partner was the one who first noticed my hearing was changing. And when I went for the test and saw the results, our concerns were validated. I didn’t just have selective hearing.
It was a huge surprise to me, as it wasn’t something that I had discussed with my CF team.
A challenging, complicated, and isolating experience
Hearing is our way of engaging with and connecting to the world. When you live with a condition like CF that is physically isolating, starting to lose a sense can be a really challenging, emotional experience, that further exacerbates that feeling of isolation. Hearing aids are amazing pieces of tech, but it was hard to admit I needed them, another device to keep my body working ‘well’.
Day to day, I can get away with not wearing my hearing aids if I’m in a home environment or with a small group of people. But, as soon as someone’s upstairs or in the other room, I just can’t hear.
It was quite hard when my son was smaller. I didn’t wake up at night when he cried. I just couldn’t hear him – it was heartbreaking.
There’s the emotional side of it, and then there’s the practical challenges of missing out on conversations or noises, particularly at work. When I’m working from home, I can turn someone up on a video call, but I can struggle in a face-to-face environment, if somebody speaks quietly, with an accent, or I’m in a large room.
At the hospital, the team always wear masks because of the NTM. Even if I’m wearing the hearing aids, sometimes I have to ask them to remove the mask because seeing their mouth aids comprehension.
Changing the narrative around hearing loss
The concept of wearing hearing aids took a while to accept. They are associated, in society, with older people. When I went into see the audiologist, all the adverts were targeted at grandparents. With comments like, “Don’t miss your grandchild’s first words!” I think hearing care communications need an overhaul to ensure that younger people aren’t put off – looking after our hearing is so important for long-term health so we need to broaden the group of people of who may need hearing support.
For people with CF, I think it would be beneficial for CF teams to talk more about the possibility of developing hearing loss, for example at annual reviews, and test for it more proactively among older patients or those exposed to certain antibiotics. There’s great awareness of other conditions we might develop as we get older, for example developing cancer, but hearing loss was not on that list of things to expect or things we might start to see.
Researching hearing loss in CF
I’m thrilled to see that there’s potentially some research taking place, because I would love to hear of other people’s experiences and to have had a bit more support.
I’d like the researchers looking into it to know that hearing loss carries a large emotional weight. The antibiotic treatments have essentially saved my life, have also now caused this difficult side effect, and I continue to require these medications every day. We’ve reduced my exposure to amikacin as much as we can, but there is an inevitability that I will continue to use it as it is the cornerstone of my NTM treatment.
I hope that research can prevent hearing loss. I hope we can have a better understanding about what level of exposure tends to cause hearing loss. This information could help prevent hearing loss for children born now, in terms of how many courses of antibiotics to prescribe and what drugs to choose from.
I’d also like to know more about how my hearing loss will affect me in the future: will it get worse? What can I do to prepare for that? What about the links between hearing loss and dementia? Am I at greater risk? It would be great to have more information about all of these things.
The fact that Cystic Fibrosis Trust are focussing on the topic of hearing loss is progress in itself. It made me feel less alone, and I hope sharing my story makes others realise they aren’t either.
More information about hearing loss in cystic fibrosis is available on our website here.
RNID may also be able to provide support.
If you’re a researcher with an interest in reducing the hearing impairments related to aminoglycoside antibiotics, please visit RNID website to find out more about our partnership research funding call. The deadline for preliminary applications is 5pm on Thursday 10 September.