“SBS can be overwhelming at the start and a huge responsibility. Go at your own pace – finding a routine that works for you can make life easier and less isolating. And remember you aren’t alone.”
“I always wanted to be a nurse and help people. There were difficult days when the pain was bad or I was tired and dehydrated but I kept working hard until I finally became a nurse. I have much more empathy because of my experiences living with SBS. It’s not always easy but I have my family, friends and fiancée, who support me and it gives me courage in difficult times.“
“Isolation is hard with SBS – medical professionals don’t often see patients like me with a rare disease. I was on IV nutrition 24/7 and friends stopped sending invites. Now, I have a medical team who understand me and are experts in my condition. Life has improved.“
“Living with SBS is extremely debilitating and at times you can become sick and tired of being sick and tired. However, it is always important to remember the importance of consistent medical care and that you are valued. Where there is life… there is hope.“