Moved to the UK, any PCD specialists?

[JDFarina]

Hello guys,

Let me start by introducing myself. I'm a 23 year old Canadian with Kartagener's. I'm a Radiographer, currently working in Newcastle. I was diagnosed at the age of 3-4 and been fine ever since. Im pretty active and I've been doing chest physio and nebulizers my whole life. (I no longer do clapping, I do however take sodium chloride nebulizers and therapep twice a day)

I've recently moved to the UK temporarily (next 2 years) and wanted to know if there were any PCD centers/specialists that I could see. I've always been followed by my respiratory doctor in Canada. I am quite knowledgeable about PCD but wanted to see if I could get an appointment with a PCD specialist.

Would you guys be able to help?

Thanks,

JD

[fionac66]

Hi welcome to the uk! I would recommend that you see Tony D'soyza ncl.ac.uk/medicalsciences/r... in Newcastle. if he can't help you (but sure he can) he can refer you to a specialist centre. Happy for you to tell him that I sent you! Good luck

Fiona

Chairman of Pcd family support group

[JDFarina in reply to fionac66]

Thanks Fiona!! I have written to him and mentioned you. Thank you very much.

[Swer]

Can I just ask what you mean when you say fine since your 3-4 years. I have 2 children one just turned 5 and a 1 year old with suspected PCD. the consultant is treating them as is. We are trying to get to UK to get tested - living in Ireland. My kids are on Hypertonic saline solution in nebulizer daily and azithromycin 3 times a week. But they continue to get bad chest infection and most times it takes 2 weeks of Augmentin DUO. Is there more I can do? Would you have advice or anyone

[JDFarina in reply to Swer]

Hello Swerve,  

I will answer this question in the topic you posted.