The Footprints Program with Arielle Radin of Gali Health
What’s in your microbiome and how does it interact with your IBD? The bacteria that’s in the gut of someone that lives with IBD is different from the bacteria in the the gut of someone that doesn’t have IBD. This is a major area of study because it may help researchers not only in developing new treatments but also in better understanding IBD. That’s why I asked Arielle Radin, Director of Clinical Research for Gali Health, to talk to me about the Footprints Program. The Footprints Program is an ambitious research project that is going to sequence poop and saliva from IBD patients. It’s being used in conjunction with the Gali Health app, which is made especially for IBD patients to track their symptoms and connect with other people who live with Crohn’s disease or ulcerative colitis. Participants in the Footprints Program will get access to some information about their microbiome. They can then look at the changes over time and see if there are any trends with the symptoms that are kept in the Gali app. It sounds pretty amazing, which is why I signed up for the program. Arielle Radin, who answers my questions about Gali Health and the Footprints Program, and on a personal note, tells us about getting married during the pandemic. Concepts discussed in this episode: Research Studies & Clinical Trials in IBD Roundtable The Footprints Program Download the Gali App (affiliate link) Find Gali Health at GaliHealth.com, Facebook, Twitter, LinkedIn, YouTube, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.
27 Heinä 202040min
The Sherman Prize With Dr Dermot McGovern
The Sherman Prize is an award created by Bruce and Cynthia Sherman to recognize those who are making great contributions to the field of research and care in inflammatory bowel disease (IBD). The Sherman family has been touched by IBD and their goal is to create a ripple effect that spreads awareness, fosters innovation, and provides inspiration in the hope that in the future, other families won’t have to contend with IBD in the way that theirs has. Dr Dermot McGovern, Professor of Medicine at the David Geffen School of Medicine at the University of California in Los Angeles and the 2020 Committee Chair for The Sherman Prize talks more about the value of the Prize to the IBD community, who can make a nomination, and how to nominate a great candidate. He also talks about his research on the genetics of IBD and why it might help in leading to new treatments. Make your nominations for the 2020 Sherman Prize 2020 by July 17th! You can learn more and do so at ShermanPrize.org. Find The Sherman Prize at ShermanPrize.org, Facebook, Twitter, and LinkedIn. Find Dermot P. B. McGovern, MD, PhD, FRCP at Cedars-Sinai and Twitter. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.
3 Heinä 202023min
Find Those Things That Make You Happy
Being diagnosed with inflammatory bowel disease (Crohn’s disease or ulcerative colitis) can upend your entire life. Then being diagnosed with a rare liver disease? It could truly leave you feeling hopeless. But that’s not what happened to Jenna Ziegler of The Comical Colon. Not long after her ulcerative colitis diagnosis, her doctor was concerned about her liver test levels. With more testing and a lot of patient empowerment, Jenna now has a presumed diagnosis of primary sclerosing cholangitis, or PSC. She tells how she has fought to get the tests she needed to understand her level of risk, and the treatment that can help prevent PSC from progressing and causing more damage to her liver. Concepts discussed in this episode: Clostridium difficile Infection Liver Function Tests IBD and Liver Disease IBD and PSC Biopsy Fibroscan Cirrhosis Enteropathic Arthritis Jenna’s Liver Biopsy Series Learn about Gali Health and download the app (affiliate link). Find Jenna Ziegler at TheComicalColon.com, Facebook, Twitter, Instagram, and LinkedIn. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.
29 Kesä 202031min
You've Got to Find the Humor in Things
Do you have a sense of humor about your IBD? Jenna Ziegler of The Comical Colon found that keeping her sense of humor has helped her through the challenges she faced after being diagnosed with ulcerative colitis in college. After fighting her way back to health after severe flare-ups and carving out the life she wanted for herself, Jenna received another stunning diagnosis: a rare liver condition called primary sclerosing cholangitis, or PSC. Over the years she has done the hard work to learn how to be an empowered patient and she shares her 5 tips on how you can learn to advocate for yourself. Concepts discussed in this episode: Pancolitis Helicobacter pylori IBD and Liver Disease IBD and Primary Sclerosing Cholangitis (PSC) Learn about Gali Health and download the app (affiliate link). Find Jenna Ziegler at TheComicalColon.com, Facebook, Twitter, Instagram, and LinkedIn. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.
22 Kesä 202028min
I Had Contemplated Keeping It a Secret
What has been your experience with ostomy surgery? If you know someone who lives with an ileostomy or a colostomy, you'll likely get your impression about having a stoma from them. But what if that person struggles to accept their stoma? When Amber Wallace Ogle of The Ostomy Diaries was faced with ileostomy surgery to treat her Crohn's disease, she was reminded of the negative experiences of her family members who lived with an ostomy. However, it didn't take long after her surgery before she was embracing life again and working to show others that life with an ostomy can be fulfilling and beautiful. Amber tells her Crohn's disease story, gives 5 tips for advocating online, and shares a message she received from a family that has been touched by her advocacy. Concepts discussed in this episode: Clostridium difficile Colectomy Proctectomy Find Amber Wallace Ogle at OstomyDiaries,com, YouTube, Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.
1 Kesä 202031min
I Evaluated What Was Really Important to Me
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. Looking for ideas to keep kids occupied this summer? Learn about the Mamas Facing Forward Stay Home Summer Camp! Find Mariah Leach at From This Point. Forward., Facebook, Twitter, and Instagram. Find Mamas Facing Forward on Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.
18 Touko 202036min
I'm Not Doing This By Myself
How would you answer these questions about your inflammatory bowel disease (IBD)? What is the best part of having IBD? What is the hardest part of your day? What is your least favorite treatment? If you could choose one dance for your doctor, what would it be and why? What is one thing you wish people knew about your condition? Amber answers these questions, posed by Shawntel Bethea of Crohn's & Stuff, for fun and also to get the conversation started about how Crohn’s disease and ulcerative colitis affect our lives. Find Shawntel Bethea of Crohn’s & Stuff on YouTube, Facebook, Twitter, and Instagram. Answer the 5 questions, tag her on social media, and use #IBDTag. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.
4 Touko 202023min
Tips for Telehealth Appointments During the Pandemic
Telehealth has become part of our new normal as we practice physical distancing during the COVID-19 pandemic. Several of the barriers that prevented us from being able to see our doctors for an appointment via a telephone call or a video call have now been managed. However, it’s still a new way to receive healthcare, and both patients and clinicians are adjusting. Learn from Neilanjan Nandi, MD, gastroenterologist and Associate Professor of Clinical Medicine at Penn Presbyterian Medical Center and the University of Pennsylvania about what patients can do to be ready for their telehealth appointments and what it’s like from the doctor’s side of the video conference call. Concepts discussed on this episode: What Is Dyspnea? An Overview of Anal or Rectal Abscess Anemia and Its Relationship With IBD How to Use Telehealth Services During the COVID-19 Outbreak and Beyond For more information on telehealth appointments, see Tips for Telehealth and Managing Your IBD Care During the COVID-19 Pandemic from Tina Aswani Omprakash of Own Your Crohn's. Find Neilanjan Nandi, MD on Facebook, Instagram, and Twitter. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.
27 Huhti 202027min
