This week we spoke to IBD and Rare Disease advocate, Aaron Blocker! Aaron lives with Crohn’s disease as well as an ultra-rare disease called Hypophosphatasia. We talked to him about managing both illnesses and coordinating his care. We talked to him about how he set up his very popular and informative Facebook community called Support for Crohn’s & Ulcerative Colitis and how he monitors this page to keep the conversations informative, supportive, and as accurate as possible. We also talked to him about his degree in biomedical research and how he uses it to help translate complicated scientific information for the patient population and to help educate our community. Additionally this has helped him engage with the pharmaceutical and scientific community professionally to help with patient education, marketing and much more. Finally we talked to him about parenting his three very small children, including twin babies (!), while living with two chronic illnesses.
Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! 😉
Links:
- Support for Crohn’s and Ulcerative Colitis Facebook page
- Information on Hypophosphatasia– National Organization for Rare Diseases
- Aaron’s page from IBD Social Circle
- IBD Dads: What These Patient Heroes Have to Say About Fatherhood– Lights, Camera, Crohn’s Blog- Natalie Hayden
- Natalie Hayden’s episode
- Fatherhood and IBD with Jordan McConnell– About IBD Podcast with Amber Tresca (Look for a BM episode with Jordan soon!)
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