Kylie's story | Action Medical Research

Kylie's story

Primary ciliary dyskinesia (PCD)

Kylie was born one month early, thankfully needing no neonatal care. But not long after her birth, her parents noticed that she produced a lot of phlegm and often had trouble breathing.

When Kylie was just eight weeks’ old, her breathing became very laboured and she had a high temperature. Her symptoms worsened and she was rushed to A&E. An X-ray revealed she had pneumonia and she spent a week in hospital in isolation.

In fact, for the first 18 months of her life, Kylie was in and out of A&E with high temperatures and breathing problems. She also had problems with her hearing and pain due to an infection of the middle ear.

At long last over two years after her birth, in October 2012, her parents Nhu and Kevin were finally given a diagnosis. Kylie has primary ciliary dyskinesia (PCD), a debilitating, lifelong, inherited illness which causes recurrent ear and chest infections, often leading to permanent lung damage. 

“It’s not been an easy ride but it’s a relief now that we know what Kylie has and she is being treated appropriately. It’s great to see such an improvement in our daughter” says Nhu “Her ear infection has now improved and she has normal hearing. She is learning and speaking well and enjoying life.”

“I hope that the research funded by the children’s charity Action Medical Research will help earlier diagnosis of other children with PCD. This will allow them to get treated sooner, so that their health can improve and the progression of their condition can be slowed.”

If you'd like to find out more, you may like to read about current research Action is funding into causes of PCD, and a completed study into improving diagnosis for this rare condition.

 

Have you been affected by Primary ciliary dyskinesia (PCD)?

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