What are the chances ?

[BISSELL1982]

Hi , My name is James and i am 37 years old . I was diagnosed with Kartageners when i was 20 years old . I also have a older brother (40 yrs) and a younger brother (30 yrs) who also have the same condition ! .All 3 of us have the same mom but myself and Matt (the eldest) have a different biological father to our youngest brother Ben who like myself and Matt also has Kartageners syndrome , but has a different biological father to the 2 of us ! , only difference is that he has Situs Inversus. So the chances of 3 brothers with 2 different biological father's to have the same condition i guess is pretty rare ? .

[fionac66]

Hi James ... I think it would be rare. Have you had any genetic testing done? I am sure your family would be interesting for the researchers!

[C9RPY]

Hi James. Thanks for the post. I think your case would be extremely rare.

As I understand it - PCD is rare enough as you need the gene from both parents and even then there's a 1 in 4 chance of having the condition.

But for your brother Bens dad to also have the gene and also have it cause the condition with his son would be incredibly rare.

Kartageners is the name given when you have PCD and situs inversus (incorporating dextrocardia).

From what you've posted - it sounds like you and Matt have PCD but correct organ placement - but your brother Ben also has situs inversus with his PCD?

[BISSELL1982 in reply to C9RPY]

Yes, exactly that. From the cursory research we have done and the genetic discussion when we started our ivf journey, we understood that my brothers and i were quite a find! When you think about the odds of this happening it's quite remarkable.

We have never had genetic testing as such. My wife did write to an American research facility who were interested but we didnt hear anymore.

My brothers and i would always be happy to be tested or studied if anyone needed us. We would also be happy to write about our experiences.

With such a unique condition we are all affected differently too.

I would describe our condition as hugely frustrating making very normal functions incredibly arduous. The common cold causes weeks of infection, blocked tubes and endless deafness! 😒😒 .

Thankfully, our ivf treatment was successful and our bambino is 8 this Saturday. He is unaffected as mum isn't a carrier.

So his deafness must be selective as it only happens when he's told to clean his teeth!

Great to be in touch with others who understand the condition! Yay!

[TerryBun Administrator]

Could this be a case of X-linked PCD, where only the mother passes PCD onto her male offspring and any female offspring are carriers, who would subsequently pass it onto any males.

I don't know too much about this subject but know it exists.