Rare diseases earned some time in the national spotlight this week, thanks to two new articles that People magazine posted on its website.
Randy Rogers, lead-act in the Randy Rogers Band, lost his 6-day-old baby girl, Rumer, to Nonketotic Hyperglycinemia (NKH), a rare disease that is characterized by the accumulation of large amounts of the amino acid glycine in blood, urine and, particularly, the cerebrospinal fluid. Recessive genetic disorders like NKH occur when a newborn inherits the same abnormal gene for the same trait from each parent, which was the case for Rumer. Rogers explains that phenomenon in this article. His story has saddened fans and readers across the country. To hear that someone lost a child at just six days old, when a parent would normally be bringing their baby home and singing them to sleep at night, is just tragic and deeply heart-breaking. NORD is grateful to Rogers and his wife, Chelsea, for sharing their story and bringing awareness to rare diseases. Seeing fans tweeting at the country artist with their condolences and knowing that people are now curious about this disease, encourages us that a new group of people now know about NKH and rare diseases. Rogers’ experience losing his daughter made him realize how fortunate they were for the hospital that they were in. To support the hospital that he was so supportive of his family during their loss, make a donation here.
Model Lauren Wasser’s latest photo shoot was to raise awareness for Toxic Shock Syndrome (TSS), a rare disease that is caused by a toxin which is produced and secreted by the bacterium Staphylococcus aureus. Read more about TSS on NORD’s website our Rare Disease Report Database. Wasser spoke out to People in this article about how she lost her leg to TSS. Lauren wants to bring awareness to the reality of TSS so that other girls aren’t naïve to it. She explained that she wished she had seen pictures of people affected by TSS as a young girl. That way, she could have been more aware of what TSS could do to a person. She told People, “Had I known toxic shock was real, and had I seen someone that had either lost limbs or spoke about it publicly, I would have never used tampons.” Lauren sports a new prosthetic leg in this powerful photo to tell girls, Toxic Shock Syndrome is real, and it is something that you need to be careful of. NORD encourages parents and caregivers to share this story with not only their daughters to explain to them that TSS does happen and it can be deadly, but to also share that this is a disease that can happen to men as well.
The powerful photo of Lauren Wasser and the widespread coverage of Randy Rogers’ news have helped to raise awareness for rare diseases, something we in the rare community need and cannot see enough of. With awareness comes support. The buzz on the internet made by the fans of these celebrities may improve the lives of others living with rare diseases.