What are the health impacts of Pfeiffer Syndrome?
As bones continue to fuse, or grow excessively, many serious health concerns can arise. Through our support groups we have found over 40 different health conditions that are common among Pfeiffer patients. During the first few years of life, everything feels like a surprise. Often, surgery to correct bone fusion is the only option, but it comes with a risk of infection and long and difficult recovery periods. One of our Pfeiffer heroes had endured 90 surgeries by the time he was five years old. If issues related to Pfeiffer Syndrome are not treated right away, they can result in serious impairments or death.
What are the social impacts of Pfeiffer Syndrome?
Due to the early fusion of the skull, the anatomy of the face for kids with Pfeiffer Syndrome is “different” and they are born with bulging eyes and misshapen heads. As a result, low self-esteem, depression, and bullying are significant concerns.
How many people are affected by Pfeiffer Syndrome?
Pfeiffer Syndrome affects 1 in 100,000 children. BORN A HERO is one of the only sponsors of research on Pfeiffer Syndrome, and the only organization we know of that focuses on support and awareness specifically of Pfeiffer Syndrome.
How can I help?
By making a tax-deductible contribution. E-mail us at email@example.com to become a volunteer and learn more about what we are doing. Please join us on our mission to fund research and innovation for a better quality of life for patients and families with FGFR Syndromes.