Posted by Sanity (1896 posts) -

Something i dont talk about much is the fact i was born with Pulmonary Atresia, Wolff–Parkinson–White syndrome, transposition of the great arteries, and some other long winded things i have no fucking clue about. I had the Fontan Procedure done when i was 4, and for the most part have been blessed with decent health since. Most people go on to live a fairly normal life style which is great as before you were usually just DOA, the main concern nowadays in this field of research is the reduced life expectancy's of those with the Fontan.

The issue is not much has actually changed in years as far as how this procedure is done and the long term outlook for most patients is bleak as the risk of complications continue to rise with age. There have been some advancements but much more could be done. One of the largest issues is people like me who look fine to the naked eye lead people to think theirs no issue, sure im healty now but in 10 years who knows?. Worse still is it is dramatically underfunded compared to other childhood diseases. Heres some facts from The Childerns Heart Foundation. The ones dealing directly with funding i copied below.

  • "Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease."
  • "Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research."
  • "Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research."
  • "The NHLBI has stated that Congenital Heart Defects are a serious and under appreciated global health problem."
  • "In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research."

Another really intresting article dealing with the Fontan can be found here, its a long read but the most startling part is this.

"In other words, odds are 1 out 4 that a child after FO will be dead by the time he or she reaches their late 20s."

The number one cause of infant death is also one of the most underfunded areas of study, i think anyone can see why this is freaking insane and needs to change. Its really a shame as i feel with funding and research these problems could be solved, along with leading to strides in heart health in general. With 1 in 100 people born with a CHD this should be a much larger issue and more well know about then it is now. Yes, not all CHD's require open heart surgery, some aren't even diagnosed at birth, but more research into the more serious ones we may understand what causes them and how to more accurately treat and manage them.

Sorry for this long winded post, just something that irritates the hell out of me and i felt like saying something. If you read this and learned something, Thank You.

#1 Edited by Video_Game_King (36272 posts) -

I blame Katawa Shoujo for making heart defects look sexy.

#2 Edited by McGhee (6094 posts) -

It's cancer that is sexy now. It use to be aids. Now it's cancer. The whole ribbon culture, footbal players wearing pink shoes, etc. . . It almost goes beyond awareness to worship of the disease. The focus is always awareness of the disease and not awareness of the research that could lead to cures. It's almost reaching a cult-like status. It's creepy.

#3 Edited by Sanity (1896 posts) -
@mcghee said:

It's cancer that is sexy now. It use to be aids. Now it's cancer. The whole ribbon culture, footbal players wearing pink shoes, etc. . . It almost goes beyond awareness to worship of the disease. The focus is always awareness of the disease and not awareness of the research that could lead to cures. It's almost reaching a cult-like status. It's creepy.

Yea, pretty much, i hate the whole ribbon thing as its retarded. We created a culture of pity when we should just do more to help prevent and cure this crap. Guess most of the CHD's are too long winded and less catchy then Cancer for a car magnet... Not that im knocking cancer research or anything but its really become more of a advertising ploy then anything research related with business uses it to draw customers with awareness months and shit.

#4 Posted by MariachiMacabre (7076 posts) -

@mcghee said:

It's cancer that is sexy now. It use to be aids. Now it's cancer. The whole ribbon culture, footbal players wearing pink shoes, etc. . . It almost goes beyond awareness to worship of the disease. The focus is always awareness of the disease and not awareness of the research that could lead to cures. It's almost reaching a cult-like status. It's creepy.

Where I live, the vast majority of people who wear the pink are genuinely doing it to support research (myself included), except the high school kids who wear "Save the BOOBIES" bracelets. I lost my aunt to breast cancer April of 2011 and my grandmother to cancer in June of 2008. For a lot of people I know it has nothing to do with it being "sexy" and more with the fact that it's almost to the point where everyone has lost a family member to cancer. I just wear a pink bracelet my cousin gave me but as someone affected twice by the disease, I'm glad it's getting attention but also agree there are other horrible diseases that deserve attention as well.

#5 Posted by audioBusting (1503 posts) -

Thanks for the informative post! Just curious here: where does the rest of the money go, actually? If only 10% of donations to American Heart Association goes to such a prevalent disease, where does the 90% go? Is most of it pledged for heart cancer or something

#6 Posted by JasonR86 (9657 posts) -

@dudy80:

The sad reality is that there is only so much money to go around and those that get to decide where that money goes play in the world of politics. That's why researchers have to play in the world of politics too. Which is why I decided to not become a researcher when I graduated.

#7 Edited by Sanity (1896 posts) -

@audiobusting said:

Thanks for the informative post! Just curious here: where does the rest of the money go, actually? If only 10% of donations to American Heart Association goes to such a prevalent disease, where does the 90% go? Is most of it pledged for heart cancer or something

I think most of it goes to understanding cardiovascular disease, high blood pressure and things that deal more with aging. Not positive though.

Thing is not much of what the AHA actually recieves goes directly into any kind of research, they do a lot of ad campaigns and such so less then 20% is spent on research. Heres there funding report for 2011.

#8 Edited by MariachiMacabre (7076 posts) -

I will also say that, although I support the attention breast cancer is getting, the Susan G. Komen for the Cure Foundation has made some deplorable choices in partnerships. Like, they partnered with KFC and I think Heckler and Koch made a line of pink guns. Like...promoting breast cancer awareness through one of the must unhealthy restaurant chains in the world and a fucking munitions company. It's gross. And their weird vendetta against Planned Parenthood really bothers me.

#9 Posted by Daneian (1228 posts) -

@mcghee said:

It's cancer that is sexy now. It use to be aids. Now it's cancer. The whole ribbon culture, footbal players wearing pink shoes, etc. . .

The focus is on breast cancer. I once heard that the attention is so completely one sided that few people donate to colon or prostate cancer so studies and treatment go largely unfunded. That seems messed up.