Learning to Live with the Hidden Scars of SBS-IF
We’re proud to stand with and listen to patients who experience #shortbowelsyndrome with #intestinalfailure (SBS-IF) – a rare, devastating condition where physical and mental scars are often hidden from public view. People with SBS-IF face #misdiagnosis, #inequality and #isolation.
Check out the inspiring stories below from patients who are bravely sharing their experiences to help others and raise awareness.
Proud to stand with the Short Bowel Syndrome Community
"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."
"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."
"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."
"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."