TOFS Awareness Week runs from the 26th February to the 3rd March, 2024 and coincides with the internationally-recognised Rare Disease Day on 29 February. Our objective is to let as many healthcare professionals as possible know about OA/TOF and the TOFS charity.
We hope that by doing this, more people affected – parents, children, adults born with the condition and extended families – will be able to find others who understand just what they are going through and access the wealth of knowledge and information that TOFS and its membership have.
We have two important aims for our 2024 campaign, to help raise awareness amongst health professionals in two distinct arenas, and with the help of our members, make the resources in our library for health professionals available to:
- Healthcare professionals treating those in paediatric care: GPs, obstetricians, nurses, paediatricians, health visitors, dietitians, speech and language therapists, gastroenterologists and respiratory specialists, and district hospitals.
- Healthcare professionals who come into contact with adults born with the condition: GPs, pharmacists, and adult respiratory and gastroenterology units, amongst others.
OA/TOF are rare complex congenital conditions, and GPs, and other healthcare professionals, may only see a patient born with OA/TOF a handful of times in their career. These were once considered paediatric conditions, but as patients have grown into middle-aged adults, research consistently demonstrates that a repaired oesophagus and trachea do not function like an oesophagus and trachea that developed in normal continuity in utero. Oesophageal nerve and muscle may not function normally, and dysphagia, reflux (GORD) are common, though not universal. In addition, ongoing respiratory problems are often a challenge.
Children and adults born with OA/TOF may also have a number of mental health issues related to their experiences – PTSD from traumatic procedures as a child and their time in hospital for example. Chronic ill health is associated with increased depression and anxiety, while the need for frequent time off school can affect social relationships and school achievement. Some children live with food aversion and long-term eating issues due to their condition.
For more information about how you can get involved in TOFS Awareness Week, please click here.
