How does being diagnosed with a chronic illness affect your path in life? For Mariah Leach, a rheumatoid arthritis diagnosis came out of the blue and put her at a crossroads. She decided to take the road towards patient advocacy. What started as a way to process her feelings and keep family and friends updated about her condition through her writing has evolved into a calling. Today, she has become a tireless advocate for people living with rheumatoid arthritis and as a resource for parents with chronic illness. It’s Mariah’s goal to ensure no one feels alone in their parenting journey. To that end, she has developed Mamas Facing Forward to support parents and foster the connections she was missing in her first years as a mom.Continue reading
In December 2019 I went to Advances in IBD, which is a medical meeting that’s focused entirely on Crohn’s disease and ulcerative colitis. The understanding that IBD is more than a “bathroom disease” has finally hit home, and attendees (which include healthcare professionals such as nurses, dietitians, gastroenterologists, GI psychologists, and colorectal surgeons) were educated on a variety of topics. In this episode I provide some of the highlights of the meeting including sessions on diet, medication risks, and pregnancy.Continue reading
We tend to think of politics as being for adults. But how do adults become engaged citizens who take part in their community? They start as children, learning from parents about the importance and benefit of volunteering, voting, and understanding the challenges and opportunities in their community. There’s so much that parents can do to raise children to be active community members. In addition, some of the many skills that are learned along the way, include public speaking, networking, teamwork, strategy, and communication. Continue reading
How young is “too young” to get kids involved in activism? Gastroenterologist and activist Dr Meenakshi Bewtra started her kids on their activism journey at birth and continues by bringing them to marches, voter registration events, and postcard writing parties. Dr Bewtra shares her tips on how you can involve your kids in activism, why you should, and how it might make your life as a parent — and activist — a bit easier.
How does IBD affect your family? Do you know about the tools and resources that are available to help you on your disease journey? On this episode of About IBD, I talk with the Director of Patient Education and Support at the Crohn’s and Colitis Foundation, Catherine Soto, who outlines the many tools the Foundation provides for anyone with IBD, including those made just for parents, kids, and teens. I also spoke with Dr Rajeev Jain, who tells me about a new, one-of-a-kind resource for women with IBD who want to be mothers, called the IBD Parenthood Project. And finally I called upon Brooke Abbott, co-founder of IBD Moms, to talk about her role as a patient in developing the IBD Parenthood Project, and she entertains me with a small rant about social media.
What is the microbiome, how might it be connected to IBD and other conditions, and how can it affect health when it’s pushed out of balance? Dr Sarina Pasricha of the Christiana Care Health System gives me the scoop on how the microbiome is created when we are young and how it changes with our activities and diet, as well as why we should not try fecal transplants at home, and how a little bit of dirt is good for our kids.
What are your traditions around Thanksgiving? What we eat and how we celebrate Thanksgiving depends on where we live, our ethnicity, and our family traditions. What matters is coming together and remembering to be thankful. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms tells me about some of her family’s Thanksgiving traditions and how she talks about being grateful with her son. We discuss some of the ways we try to support the IBD community and what we can do better, especially during the hectic and stressful holiday season. Plus, see the end of the show notes for some of Brooke’s recipes!
How does IBD impact the family? Couples who are thinking about having children when one or both of them have IBD often have questions about how the disease will affect their family. Amber interviews her 8-year-old daughter and 10-year-old son about how IBD does — and doesn’t — affect their lives.
What’s a Twitter Chat?
A Twitter chat is a way for Twitter users to gather together at the same time and talk about a particular topic. In this case, we’re moms who have IBD and we want to discuss clinical trials. Our co-host this month is Clara Health, a group focused on making it easier for patients and families to access breakthrough treatments. By searching for, or clicking on, the hashtag, #IBDMoms and #PatientsHavePower you can follow along with all the posts using that tag. In this way, you can see the conversation and also take part.
I talk with Brooke Abbott of The Crazy Creole Mommy Chronicles about what it’s like to be a parent with a chronic illness and how that’s affected our relationship with our children. We also try to figure out how to clone ourselves and I’m so tired that I get the name of a well-known celebrity wrong — several times. Continue reading