What is Pfeiffer Syndrome?

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 info@bornahero.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.

SHARING IS CARING
Legal Disclaimer

Legal Disclaimer

The contents of this website, such as text, graphics, images, and other material contained on the website
(“Content”) are for informational purposes only and do not constitute medical advice; the Content is not intended
to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician
or other qualified health provider with any questions you may have regarding a medical condition. Never disregard
professional medical advice or delay in seeking it because of something you have read on this website.

In the event of a medical emergency, call a doctor or 911 immediately. This website does not recommend or endorse
any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the
Site. Reliance on any information provided by this website is solely at your own risk.

The Site and the Content are provided on an “as is” basis.

Links to educational content not created by Born a Hero are taken at your own risk. Born a Hero is not responsible
for the claims of external websites and education companies.

×