5Jun/112
How long could a baby born with Harlequin disorder/disease live?
I tried to look it up online but couldn't find the answer. I came across some videos of it on youtube and had never seen it before adn now I am just curious. It's very very sad and I don't see how a baby born with a serious case could live normally.
June 5th, 2011 - 03:33
In the past, the disorder was invariably fatal, whether due to dehydration, infection (sepsis), restricted respiration due to the plating, or other related causes. The most common cause of death was systemic infection and sufferers rarely survived for more than a few days. However, there have been improvements in care, most notably the drug Isotrex. Some patients have survived into adolescence and, in very rare cases, lived to adulthood.
June 5th, 2011 - 03:33
I was able to find this that the following at this site
http://www.smso.net/forum/showthread.php?t=14800
Treatment and prognosis
In the past, the disorder was invariably fatal, whether due to dehydration, infection (sepsis), restricted respiration due to the plating, or other related causes. The most common cause of death was systemic infection and sufferers rarely survived for more than a few days. However there have been improvements in care, most notably the drug Isotrex. Some patients have survived into adolescence and, in very rare cases, lived to adulthood