We had the pleasure of getting to know Dani Edelstein in this episode! We talked to her about being diagnosed when she was only 8 years old and what it was like for her as the child of a doctor to have to navigate the medical system on her own when she got to be an adult. We discussed how the language used around IBD care can create difficulty for folks living with it- for instance when healthcare providers say that a patient has "failed" their medication. Dani talks about how that lead to patients feeling responsibility and even shame for their disease. We talked about the importance of mental health care, the differences between a loop and an end ileostomy, and so much more.
Links:
- What is an ostomy? – United Ostomy Association
- Really informative video about different types of stomas– Zero to Finals YouTube channel
- Many toolkits for children living with IBD and their parents including transferring care to an adult GI– ImproveCareNow
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