Too frequently, we hear the difficulties that adults born with OA/TOF face in finding knowledgeable clinicians, and some years ago, TOFS produced its first leaflet written specifically for healthcare professionals.
We are busy working on a new, much more comprehensive leaflet to help educate and inform GPs when confronted with OA/TOF patients whose condition was considered ‘repaired’ at birth, yet continues to cause serious complications in adulthood.
The proposed leaflet will include evidenced recommendations for long-term management of patients with repaired OA/TOF and respiratory morbidity, along with recommended treatment for gastro-oesophageal reflux disease GORD). It will discuss long-term gastrointestinal problems, dysphagia, eosinophilic oesophagitis and Barrett’s oesophagus as well as other relevant issues for adults born with OA/TOF. Watch out for our emails in the Autumn announcing its arrival.
As part of our research for our new leaflet, Dr Caroline Love, a valued member of the pastoral support sub-committee at TOFS; and herself an adult born with OA/TOF has undertaken an extensive literature review.
Caroline has uncovered several research papers that contain valuable information for those struggling to get heard.
We have collated a number of these on our External Research page and hope they will help you in your ongoing care with your GP.
