How many people Has got all

[martin67]

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

[TerryBun Administrator]

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

[martin67 in reply to TerryBun]

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

[TerryBun Administrator in reply to martin67]

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.

[PetraK]

I do.

[Morrison10]

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

[fcfilice]

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....

[cctemplet in reply to fcfilice]

Were you able to have children?

[fcfilice in reply to cctemplet]

I had my daughter via IVF and now I have my little pumpkin

[martin67]

No cannot have any children at all

[cctemplet in reply to martin67]

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?

[fcfilice]

My Respirologists diagnosed my Kartagener's syndrome when I was 18 and I had a genetic test done which indicated that I carry two different copies of DNHA5 mutation. Also I have a family history of others who had PCD but each case had different degrees of the onset of bronchiectasis and sinusitis. When I did my rounds of IVF almost all the embryos where fertilized but the frozen embryo transfers never resulted in a live birth. Only the fresh embryos had positive results. The process of IVF was hard but my daughter was worth every hurdle.