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Daily Archives: February 26, 2008
This story was sent to me by a Blog Reader, Mr. Todd Barrish. Thanks Todd for the story! Hopefully we can raise awareness about this tragic disease. It may actually be more common that we think!
Their story was recently a featured on the front page of the titled, “Unspeakable loss, genetic puzzle” and can be found here – http://www.philly.com/philly/news/breaking/15700892.html.
To give you a quick snapshot of the story, in September 2007 Lincoln B. Snyder (son of Craig Snyder and NiCole Robinson Snyder), died at 6 weeks old from the disease called Alveolar Capillary Dysplasia (ACD).
Lincoln is actually the 3rd child that Craig has lost to ACD. When Craig and his first wife lost Rebecca, their first child, they were told that ACD was a ‘mutation’ and they were safe to have a second child. And when Jonathan, their 2nd baby, died from ACD, the geneticists again offered their best theory: ACD must be a recessive condition, so both parents must carry the gene(s).
ACD has only been known to be very rare — with scarcely more than 114 cases documented in medical history — so, the thought that it could ever happen to Craig with someone else was completely out of the question. In fact, Craig and NiCole had one healthy daughter together name Shirley, which seemed to confirm this.
Then came Lincoln . Since Lincoln had ACD, his death has changed what scientists thought they knew about this disease. It now appears that ACD is caused by a dominant gene which only has to be carried by one parent. Therefore, many more children may be dying from it and we just don’t know it. The only way to diagnose ACD is to put lung tissue under a microscope. Since no autopsy is performed on most infants who die, many cases are certainly being misdiagnosed.
Craig and NiCole are now committed to unlocking part of the mystery of ACD and to finding the gene(s) that cause it. They have set up a Foundation with the potential to save other children, and all who love them, from the terrible suffering of this unspeakable disease.
I thought you may be interested in exploring this further, maybe taking a look at their plight. You can check out more info on this at www.3angelsfund.org.
World governments are focussing too much on fighting terrorism while obesity and other “lifestyle diseases” are killing millions more people, an international conference heard Monday.Overcoming deadly factors such as poor diet, smoking and a lack of exercise should take top priority in the fight against a growing epidemic of chronic disease, legal and health experts said.
Global terrorism was a real threat but posed far less risk than obesity, type two diabetes and smoking-related illnesses, US law professor Lawrence Gostin said at the Oxford Health Alliance Summit here.
“Ever since September 11 we’ve been lurching from one crisis to the next which has really frightened the public,” Gostin told AFP later.
“While we’ve been focussing so much attention on that we’ve had this silent epidemic of obesity that’s killing millions of people around the world and we’re devoting very little attention to it and a negligible amount of money.”
The fifth annual conference of the Oxford Health Alliance — co-founded by Oxford University — has brought together world experts from academia, government, business, law, economics and urban planning to promote change.
Like terrorism, some passing health threats get major government attention and media coverage, while heart and lung disease, diabetes and cancer account for 60 percent of the world’s deaths, the meeting was told.
“It is true that new and re-emerging health threats such as SARS, avian flu, HIV/AIDS, terrorism, bioterrorism and climate change are dramatic and emotive,” said Stig Pramming, the Oxford group’s executive director.
“However, it is preventable chronic disease that will send health systems and economies to the wall.”
The conference is due to end Wednesday with a call on governments and big business among others to take action to avert the millions of premature deaths due to chronic disease.
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