Dec. 4, 2015
Posted by Jennifer Huron
Sudden Infant Death Syndrome (SIDS) is the latest rare disease to have trended on Facebook, following the release of a new study in Pediatrics journal on December 2. The study says that there are other factors, such as babies being exposed to smoking, which can increase the risk of sudden infant death syndrome. The study is being talked about across social media by individuals, parents and national media outlets.
According to NORD’s Rare Disease Database report on SIDS, there are typically no symptoms prior to a SIDS death. By definition, the cause of SIDS is unknown. Therefore, the existing research addresses modifiable environmental risk factors, neuropathological and genetic factors that may predispose to SIDS, potential physiologic markers in at-risk infants, and animal modeling.
“It’s also important to note that some cases of SIDS may be undiagnosed CCHS (central congenital hypoventilation syndrome),” says NORD’s Vice President of Educational Initiatives, Mary Dunkle. “You can learn about this rare condition on the website of one of NORD’s member organizations, the CCHS Family Network.”
NORD educates families, doctors and legislators about the 7,000 rare conditions, such as SIDS. On December 18, 2014, the President signed the Sudden Unexpected Death Data Enhancement and Awareness Act (H.R. 669), recognizing SIDS and SUDC (sudden unexplained death in childhood). Read more about SUDC and parent advocate Laura Crandall, a 2015 NORD Portrait of Courage honoree, here.