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.