Why should you raise awareness?
Below are responses from BOS parents and siblings describing their reasons why raising awareness is so important.
"Being that Rosemary was diagnosed at 26 years old , my parents didn't know much of anything about the syndrome! It would have really helped to understand more about the complications she had gone through. Raising awareness is very important because if more people understood it or were familiar with BOS then she could have been diagnosed sooner! Raising awareness is important in order for more kids to be diagnosed and the best care." -Anita (Sibling of BOS)
"Even though BOS is extremely rare, I was familiar with the name of the syndrome because Taylor had posted photos of her daughter in the Syndromes Without a Name Facebook group. When we got our diagnosis, our genetic counselor was surprised to hear me say, "Oh, I've heard of that!" Now that we have had our diagnosis for a year, awareness is important so that more researchers are interested in studying rare disorders and improving the lives of children like my daughter." - Carrie (Parent of BOS)
"Our doctor had to fight long and hard to get whole exome sequencing to be covered by insurance. Perhaps if more of the success stories like ours were well known, insurances would cover it for more people. Then more families would have diagnosises , support groups, a place to start for new symptoms, and pooled knowledge." - Julie (Parent of BOS)
"Our geneticist had heard of bos but didn't see it in bowie until we mentioned the occasional red mark on his forehead. That made her think of bos. She then put bowies case notes forward at a genetic board and the others didn't think it worth testing him as the chances were slim. She followed her gut and tested anyway and it came back positive. I think we definitely need more awareness of it so that Dr's and geneticists have the knowledge to see the symptoms and help others get a diagnosis x." -Bekki (Parent of BOS)
"Our geneticist had also never heard of BOS until our son. Once she found out she said she had seen other kids over the years that she thought may have it but the families no longer saw her. Tristan had many, many genetic tests done. He had the micro array, FISH, as well as many tests for CDLS until WES was finally done in 2015. He was 15 years old. I'd like more awareness so that other families get their diagnosis at a younger age. If we would have known sooner than we would have known some of the medical things to expect or watch for." -Danette (Parent of BOS)
"Lorelei had several tests over the years. And they always came back normal. 18 years old and finally got a diagnosis. I always felt in time with improvements in science we would get an answer. Still was very shocking to actually hear the testing found something." -Erica (Parent of BOS)
"The reason we would love for people to know about BOS is so when my little guy goes to a dr they don't know what I'm talking about and I have to explain what it is and complications and everything as they look at me like I have no idea what I'm talking about or how to treat him." -Tina (Parent of BOS)
So please, help us raise awareness for these children by wearing gold and denim on April 6 and sharing our social media sites.