My 15 year old daughter has been diagnosed with numerous chrpe lesions in her right eye. We have been to 3 difference opthamologists and they can't seem to agree if they are the type of lesions associated with FAP and Gardner's syndrome. Right now we are waiting for her to have a colonoscopy and genetic testing. These diseases do not run in our family. I am totally confused and nervous. Do you have any comments.
As far as I understand it many people without FAP have CHRPE in one eye. Those with FAP tend to have CHRPE in both eyes. I have recently been diagnosed with a desmoid tumour which is also asscoiated with FAP and have to go for a CHRPE test in the next coupple of weeks so this is how I know this information.