Olympic PSA: Flo Hyman remembered, let her legacy save lives

[kbutton]

https://vault.si.com/vault/1986/02/17/marfan-syndrome-a-silent-killer?fbclid=IwAR195C21XBLIUbKaU7k7t2TViLg0XH7NGOsdRsFt_MpLeubPYt99sFQYe8s#:~:text=Hyman%2C%20the%20star%20of%20the,who%20was%206'5%22

Know the Signs; Fight for Victory: https://www.marfan.org/dx/score

To learn about Marfan Syndrome and other aortic conditions, check out these organizations:

https://www.marfan.org/

https://www.marfan.org/about/related-disorders

https://www.johnritterfoundation.org/

***The historical SI article has some seriously dated information--the picture is much more optimistic now, thanks to people like Dr. Reed Pyeritz, who is included in the article. 

 

 

Edited July 30, 2021 by kbutton

[ktgrok]

Thank you for this. I saw a documentary on Marfan, and halfway through realized my husband at the time matched a LOT of the features. He talked to his doctor about it, who agreed and sent him to a cardiologist. It turned out he did not have Marfan syndrome, but he DID have cardiomyopathy. We wouldn't have known if I hadn't seen that documentary, and sent him to a doctor. And if we hadn't known he had cardiomyopathy I probably would have let him go home and nap that time he had a weird cough and was tired. Instead, we checked his pulse, realized it was sky high, and he went to the ER where he was diagnosed with congestive heart failure. Had he gone home and napped, he would have died in his sleep before I got home from work. We only knew to be that cautious because of his diagnosis, and we only had that because of that documentary. 

I still think he had SOME kind of syndrome, but it doesn't have a name yet. He passed away a few years ago from a combination of heart failure and kidney failure. 

 

[kbutton]

1 hour ago, ktgrok said:

I still think he had SOME kind of syndrome, but it doesn't have a name yet. He passed away a few years ago from a combination of heart failure and kidney failure. 

They uncover more genetics all the time. Even if they don't find a gene for one, finding a gene for another can clear the way to differentiating between them and getting more targeted treatment.

My family has a long history of heart/aortic issues, but my son is the only one that fits the Marfan profile or has a genetic diagnosis. 

[ktgrok]

18 hours ago, kbutton said:

They uncover more genetics all the time. Even if they don't find a gene for one, finding a gene for another can clear the way to differentiating between them and getting more targeted treatment.

My family has a long history of heart/aortic issues, but my son is the only one that fits the Marfan profile or has a genetic diagnosis. 

Yup. He had an autoimmune kidney disease, pectus excavatum, keloid scarring, extensive stretchmarks on his back, the tall and lanky maran body type, digestive issues he never bothered having diagnosed or addressed, and later some weird skin cyst thing that may have been from medication he was on after his kidney transplant..not sure. His sister also had cardiomyopathy and had a heart transplant.