22/05/2026
The 19th of May is known as World IBD Day; held annually to help raise awareness for people living with IBD and how it can affect many different areas of a person’s life including stress, pain, relationships, and mental health shape daily life with IBD.
17 year old Elizabeth wanted to help raise awareness by sharing her experience of being diagnosed with IBD. “I started noticing symptoms when I was around 10 years old and I ended up being in and out of hospital trying to find out what was going on. We were moved to the Royal Hospital for Children, and then I was put onto steroids, followed by other medication, but nothing really seemed to be working.”
Elizabeth is now getting transfusions every eight weeks to help manage the symptoms. “The transfusions help, but it’s still difficult to talk to people about it. One of my friends asked me if it was contagious when I told her what I had been diagnosed with, there is still a stigma around the word ‘disease’. I think it’s important to have conversations about it and raise awareness about it.”
Elizabeth's Dad said; “Initially we were panicking. We were told all the things that it could be, or that could happen with Elizabeth, since nothing was helping; the negatives were outweighing the positives at that stage. We had a 10 day period where no medicine seemed to be helping at all. Then, when Elizabeth started on Infliximab, it’s been quite steady for her and she has only had minor flare-ups.”
Elizabeth told us “I haven’t had to give too much up thankfully, but I feel really tired and I need to listen to my body. I feel much more comfortable now with what’s going on and what lies ahead.
If you are going through a diagnosis of this, or also have IBD make sure you take time for yourself, it can be exhausting and very tiring at times. For everyone who doesn’t need to go through something like this or live with things like IBD, listen and be kind to people because it’s not a visible disease people tend to think it’s not as bad. ‘Disease’ can be a very taboo word, that word can spread panic, but if there was a bit more awareness around it then it would help break the stigma around it.”
