How many people Has got all - PCD Family Suppor...

PCD Family Support Group (UK)
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How many people Has got all

Hi All

It’s ok to find out how people there is with Kartagener’s Syndrome ( PCD ) but how many people are there with Kartagener’s Syndrome ( PCD ) with Dextrocardia with Situs Inversus Totalis

Martin B

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Up to 50% of patients with PCD have dextrocardia (heart on the right side) and situs inversus (internal organs on opposite side to normal). A small percentage of the PCD population have organ placement or development that's neither typical nor totally reversed.

You can find more information on the PCD Family Support Group UK website

pcdsupport.org.uk

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That’s not the question i was asking

The question I was asking was how

many people on here pcd support

group has got the lot

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Hello Martin

This is the forum for the PCD Family Support Group (UK) and the link, I posted above, is our website. The support group has been going for around 28 years, long before we had a website and forum. People dip in and out of the group, the website, Facebook page and this forum as and when it suits them, so we don't have a specific number of people in the group. We know of many PCD people with situs inversus, this includes dextracardia and equally those who don't have SI. They don't tend to use the term Kartagener's syndrome so much these days, it is covered under the name of PCD.

I hope that helps and that you are keeping well.

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I do.

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Hi Martin67, having dextrocardia with situs inversus & PCD is the true definition of having Kartagener. If you only have the PCD, then you don’t have Kartagener

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I have Kartagener's Syndrome with dextrocardia and situs inversus.

Kartagener's Syndrome is called Primary ciliary dyskinesia (PCD) type 3.

Kartagener' Syndrome is a combination of PCD and Situs Inversus....

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Were you able to have children?

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No cannot have any children at all

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My husband is 41 and has Kartagener and has no children due to zero motility. We are currently going through our second round of IVF.

What type of physician diagnosed you?

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