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24 Mar 2019
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TOPIC: Hereditary research on pectus?

Hereditary research on pectus? 6 months 2 weeks ago #8591


I'm a male that had my Pectus improved with the Ravitch procedure when I was 19 (The Nuss procedure was not as well known then). Back when I had the procedure, there was almost no research on the genetics of Pectus. My grandmother had severe Pectus, and my grandfather used to say "Your chest looks just like your grandmothers!".

It took a lot of bravery, but I went to a doctor and had myself diagnosed. It was very severe. My heart was pushed out of place and lung capacity reduced. Funny thing is that I asked my doctor, "Is this hereditary? My grandmother had the same disability". My doctor kept saying "No, this was just a roll of the dice. There is no connection". Many years later, I've been reading research that now suggests that 40-60% of pectus is inherited in some families. Maybe it was tough on my doctor to give me the news...

My question is, what is the likelihood that I will pass this on to my children (Since both my grandmother and I have it), and what are the connections to other possible tissue disorders (scoliosis, etc.) I should know about?

All of my girlfriends have asked me if it is genetic, and until recently, I told them "No, don't worry" (Following my old doctor's footsteps). But I feel that after reading more about this online, I need to be better prepared with a more detailed answer. I do not blame any of my girlfriends for asking me. They are only doing what is right for their future parenthood. I am fine with my situation, and believe in learning more about my condition "eyes wide open". I spent many years improving my physical health after the surgery, and even though my procedure was not 100% effective (I still have some rib flaring and fair amounts of nerve damage), I have learned to love life and accept my body as it is, and I am living a very full career. There is alot of comfort that comes with growing up.

The hereditary aspects do worry me, though, and relationship questions have been difficult.

Any news, advice or a doctors name I could talk to about the latest research would be appreciated.


Hereditary research on pectus? 6 months 2 weeks ago #8709

I'm pretty sure it is genetic. I have/had Pectus Excavatum and one of my brothers also had it (I have 8 siblings). A friend of mine had PE and his son has it. Different people have different disability because of it (my brother had no problem with cardio).

I say it's maybe like a cleft-palate. Not everyone in the family will have it, but you will see it along some family lines.

I am understanding that Pectus has long been dismissed as a cosmetic problem and is downplayed by pediatricians and primary car doctors. Not being able to run because you can't breath seems abnormal. Having your heart and lungs compressed is so much more than a cosmetic issue. As the correction of this problem continues, I hope the teachings of the condition filter to the medical students and residents.
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