PCD Family Support Group (UK)
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PCD life expectancy

Hello,

My husband who is 30 years old, has just been diagnosed with PCD along with situs inversus.

I am live in NY and am still trying to find out about the condition. I wanted to know the phases of the condition/ or ususal life expectancy of patients with PCD.

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Hello Tavneet, my husband was diagnosed with PCD at the age of 38 and I found it helpful to read the information provided on the PCD family support group website: pcdsupport.org.uk

There may be a version of this for the US too but there's a lot of helpful information on the UK site.

It's always worrying when a loved one is diagnosed with a health condition but I hope you'll be reassured when you learn more about the condition.

Best wishes to both you and your husband.

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Hi,

Thank you for the information. But i actually do not find the life expectancy of pcd patients anywhere. Do most patients go on to live normal life cycles?

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Yes they do. If you deep dive into epidemilogical papers you’ll find repeated reference to “near normal”. I drove myself mad trying to find the answer to that question when my daughter was diagnosed - you’re just desperate for reassurance when it’s a loved one aren’t you. The fact that you won’t get a specific number is nothing sinister it’s just that as almost any epidemilogical study of pcd is necessarily collected from centres around the world, because of the relatively small numbers in each country, with varying population factors and pcd being a spectrum illness and there will be enormously varying individual factors. There is also lots of exciting cilia research going on with things happening in cilia “mechanics” (for want of a better word) that will revolutionise treatment for pcd in our lifetimes. Nutzruz is spot on it’s about good management to keep himself healthy and to minimise any permanent damage being caused to his lungs. My daughter doesn’t have situs inversus and i don’t know enough about it to comment. Best of luck to you both on your journey.

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Hi Tavneet ... I agree with the other comment have a look at our website pcdsupport.org.uk but I would also recommend you get in touch with the US Group pcdfoundation.org

good luck

Fiona

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Hello. I'm a 16 year old with PCD and was wondering the same thing as I grew older with PCD. There is no particular life expectancy. So long as he gets his pneumonia jab, keeps active and there is a particular physio he should be doing which is a saline nebulizer ( ask for 7% saline as any higher or lower will inflame his airways ) and an acapello. These will help him get the illnesses he gains over time out of his system. This is for all ages. Otherwise he will eventually get ill. The treatments mentioned are to help improve your life expectancy to no limits. Otherwise without them. It would be 51 years old at the latest.

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