Chrissie's Story
A journey of revelations and finding support in the world of rare disease
I was born in 1975 with long gap oesophageal atresia and tracheoesophageal fistula.
In those early months I was fed through a gastrostomy tube.
At eight months old the surgeons performed a colonic interposition so that I could eat and swallow my food.
This mostly works well, however throughout my childhood and into adulthood I still experience a lot of gastrointestinal pain, severe reflux, fluctuating blood sugars and bowel related issues which impact my day to day.
My childhood medical notes confirmed I also have dextrocardia and spinal abnormalities. I have a mild curvature of the spine and hemi-vertebrae.
In the last few years after having multiple x-rays and scans I have learnt that I was born without a gallbladder and have pancreas divisum (my pancreatic ducts are in two parts) and I have a hiatus hernia.
I was also advised that my heart has a bicuspid valve and my aortic root is dilated, which needs careful monitoring.
These new revelations have caused me to experience health anxiety and concern about what may happen in the future. This led me to undertake my own research about my complex conditions and through doing so I joined the TOFS charity, where I have been able to connect and meet with others with similar health conditions.