What is Pfeiffer Syndrome?

Pfeiffer Syndrome is a rare genetic disorder which causes bones to fuse prematurely or extra bones to grow in different parts of the body, including the skull. There are three forms of Pfeiffer Syndrome, based on severity. Type I, considered mild, does not typically impact mental capacity or life expectancy. Types II and III often involve problems with the nervous system and can cause brain damage leading to a decreased life expectancy.

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. The problems are constant, everything is a surprise, and it is a life-long struggle. Sometimes surgery is the only option, but it comes with a high risk of infection, and often long and difficult recovery periods. One of our five year old Pfeiffer heroes has endured 90 surgeries. If issues related to Pfeiffer Syndrome are not treated right away, they can result in serious illness 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, social issues are a significant concern.

How many people are affected by Pfeiffer Syndrome?

Pfeiffer Syndrome affects 1 in 100,000 children. There is practically no research being done and very little is known about Pfeiffer Syndrome.

How can I help?

Visit our website at www.bornahero.org and make a tax-deductable contribution. Become a volunteer and help us in our efforts to educate the public about Pfeiffer Syndrome. E-mail us at info@bornahero.com to learn more about what we are doing and how you can help. Please join us in encouraging the world to recognize the beauty in differences.