New diagnosis

[BronchiPCD]

Hi, I was finally diagnosed with PCD yesterday as it came up on the 100,000 genome project. I’ve been diagnosed with bronchiectasis since age four, I am now twenty one. Basically I was looking to connect with other PCD sufferers that are around my age as I find talking to people who truly understand so helpful. Thank you so much.

Beth

[LD28 Administrator]

Hi Beth,

Welcome to the club! Annoying as a diagnosis is, hopefully it's brought you some reassurance and clearer understanding.

Make sure you take a look at our website pcdsupport.org.uk for any info. If you are UK based and want to meet others with pcd, we have a patient-led Facebook group called PCD Connect (there are similar ones out there but our one has a light blue and grey logo with a chain link between PCD and connect).

Again if you are UK based you should make sure you've been referred to one of the UK specialist PCD centres: Leeds, Leicester, Southampton, London (Royal Brompton).

Email me at [e-mail] if you have questions about this. Take care!

[ExeSailor]

Hi Beth,

My name is Alice and I was diagnosed at 25. I’m now 30 and so have 5 years experience of treatment, physio. I was diagnosed with bronchiectasis last week too.

Having a diagnosis will be so helpful to you in terms of being able to keep your chest as clear as possible and they can now support you further with physio etc - although, I’m guessing you already were doing physio due to your bronchiectasis.

Please let me know if you would like to be in touch and if I can help or answer any questions. Are you Uk based?

Alice