Because FA is a rare disease, many of your local physicians may not be familiar with treating someone with FA. It’s important for you to provide your/your child’s physician(s) with information specific to the diagnosis and management of FA. The best resource you can offer physicians is a copy of the Clinical Care Guidelines, available online. We are also happy to provide you and/or your physician with copies free of charge, upon request.
Head and neck squamous cell carcinoma (HNSCC) is a significant threat to people with FA, regardless of bone marrow transplantation status. Not only is the incidence of HNSCC considerably higher than in the general population (500-700 times higher), patients with FA present with these types of cancers at a younger age than those without FA. Regular screenings are critically important.
To help you communicate the urgency of this issue with healthcare professionals, we’ve prepared two flyers: one for dentists and one for ear, nose and throat doctors (ENTs).The flyers include specific instructions on how to conduct a thorough oral cancer screening exam. We recommend that you take a flyer with you to every visit with your ENT physician and dentist. You can request copies from our office or download the files.
*Special thanks to FA parent and oral surgeon, David Fiaschetti, who consulted on this project.
Information provided on this page about medications, treatments or products should not be construed as medical instruction or scientific endorsement. Always consult your physician before taking any action based on this information.