Antonia – EDS
My name’s Antonia, I’m 18 and I have not left hospital for over three years.
After I suddenly became unwell when I was 15, I was diagnosed with Elhers Danlos Syndrome (EDS), a rare condition which affects all the connective tissue in my body. Since then I was a resident at the London Royal Hospital (LRH) in Whitechapel for two years, away from my friends and family, and then in the Gloucestershire Royal Hospital.
Some of the problems EDS causes me include not being able to process food, meaning fluid has to be put into my bloodstream through drips including one directly into my heart. I have also got gastrointestinal failure and Postural Orthostatic Tachycardia Syndrome (POTS) which means I can’t stand up without suffering an abnormally large increase in heart rate.
From my home in hospital I have tried to campaign for greater understanding of EDS and other disabilities, so I was delighted when Caudwell Children invited me to become an Ambassador for the charity. The lovely Family Support team have helped me and my family to work towards the day when I can return home by helping find the right equipment and providing a fancy wheelchair that I can use to move around when I’m out of bed. I hope that with my new wheelchair and the support of Caudwell Children I will soon be permanently back home near all my friends and family.