"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."
on Wiki, Tbh Thourgh the pain and every day you must have with that it is a blessing if they pass young, they have so delecate living styles no social times no freinds, its a ruined life