Note: the two videos below are also available on our website
She doesn’t want your sympathy. She doesn’t want your admiration. She just wants your understanding.
Rachel Bonner, a sixteen-year-old high school student and founder of the Hope for Crohn’s charity, spoke to the CIRM governing Board on September 10th about what it’s like living with Crohn’s disease. In the eight years since her diagnosis, Rachel has come a long way in talking publicly about her condition:
“I never thought I’d stand up here and admit to wearing a diaper while being in middle school. But Crohn’s turns from a secret struggle to something I want to share with other people. And ultimately have others understand the life of a Crohn’s patient just a bit more. “
Crohn’s disease is a type of inflammatory bowel disease (IBD) in which the intestines are chronically inflamed. Symptoms of Crohn’s include a frequent need to pass bowel movements, constant diarrhea, rectal bleeding, fatigue and loss of appetite.
In a healthy individual, the friendly bacteria living in the gut are ignored by the immune system. But in the case of IBD, the immune cells attack these bacteria as foreign invaders, causing an inflammatory response. The sustained inflammation eventually damages the gut wall causing the symptoms of IBD.
Current therapies for IBD focus solely on treating the inflammation. Dr. Ophir Klein, a CIRM grantee and UCSF researcher, also spoke to the governing Board and described another treatment avenue:
“There’s another component that’s been under-explored and potentially has a lot of impact therapeutically which is the regenerative aspects of the condition because after the inflammation occurs in the gut, the gut needs to heal, and that healing comes from stem cells. “
In his presentation to the Board, Dr. Klein detailed his lab’s work to understand how stem cells regulate the healing of the intestine and to eventually find cures for IBD.
Although Rachel and her doctors have found a treatment sweet spot, which has kept her Crohn’s at bay, she still holds out hope that a cure, perhaps from a stem-cell based therapy, is not too far away:
“Everyday I go to sleep hoping that this treatment sweet spot will work until they find a cure”