When it comes to managing life with Fanconi anemia (FA), knowledge is power. That’s why FA researchers, adults with FA, and the FARF team have been working to increase education and empowerment for all people with FA.
We’re proud to introduce FAexam, a brand-new app designed to assist individuals with FA in performing and documenting oral self-examinations.
The power of at-home screening
Driven by Christine Krieg, Executive Director of the German FA Support Group, and Eunike Velleuer, FA clinician and researcher, this app is a product of their long-running study “Reducing the Burden of Squamous Cell Carcinoma.” Through this 15+ year study, the team has seen hundreds of people with FA, inspecting their mouths for any spots or changes. During these visits, Christine and Eunike began educating people with FA how to conduct their own exams at home, which can be very helpful in monitoring oral health between visits to the dentist or ENT.
It’s important to note that these self-screenings are complementary to regular, six-month visits to dentists or ENTs. They are not meant to replace regular doctor visits, but serve as an additional tool for care.
In addition to research, education and empowerment are key to intercepting cancer
Because people with FA are at a higher risk of cancer than those in the general population, it is essential to be proactive. That means not only practicing good oral hygiene, but also actively participating in screenings. The goal is to prevent any potential diagnoses from occurring too late, ensuring timely interventions and treatments.
Of course, when facing a something as terrifying as cancer, it’s natural to resist engaging with anything cancer related. That’s where the empowerment piece comes in.
Enter: FAexam. This app provides the necessary guidance and resources to perform thorough oral self-examinations and it’s designed to empower users to learn about their care, participate in prevention, and even track their emotional well-being.
Who is the app for?
For those with a heightened sensitivity of the oral mucosa and who may experience oral lesions at an earlier stage, the app serves as a valuable tracking tool. It was designed for people with FA, but could even be used by others with higher risk of oral cancer, as well as physicians.
Our recommendation is to initiate oral self-screening around age 16. Parents can also use the app to monitor their children's oral health.
See what’s inside the app
How to get access:
You can download the app in the App Store for iPhone or the Google Play Store for Androids.
You can visit the informational library and watch the video all about oral-screenings at www.fanconi.de/faexam.
Note: this app is a collaborative project between individuals with FA from all over the world, the Fanconi Anemia Research Fund and the German Fanconi Anemia Support Group.