Coping With FAP The Roll of Patients’ Associations

Abstract

This is our personal story of how two senior citizens found out about familial adenomatous polyposis (FAP) late in life. Circumstances gave us the time to investigate and understand FAP from a layman’s point of view and also to help others come to terms with the challenge of FAP. We recognised the need for uncomplicated information for those affected by FAP and for a centralised point for this information without the need to scour the internet. So FAPGene (http://www.fapgene.org.uk) was born. Those searching on the internet for information about the APC gene which is linked to FAP are most likely to have found a mass of technical articles often requiring a subscription. We found that a search for FAP is far more productive to a patient’s needs. Very early on we found that patients/individuals often made initial contact via email with no further enquiry after the information they needed was passed on. This is reflected in our article where FAP is described as a lonely disease. One of the success points shown is our ability to work with health professionals and not cross that border into providing medical information. Again, many patients/individuals were given contact numbers for these medical questions. The question of whether FAPGene will progress to a true support group or patient association depends on several things including the age of John and Mick and their own state of health. At the moment they are fortunately able to continue improving the scope of FAPGene but the future is uncertain.