Living With Crohn's Disease and a Rare Disease
About IBD
02/21/21
•37m
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Living with one disease is bad enough, but living with two adds more than two times the complexity. As a young man, Aaron Blocker was diagnosed with Crohn's disease after years of coping with strange and seemingly disconnected signs and symptoms. He continued to have problems which resulted in two hip replacements that were blamed on prednisone. However, after one of those hip replacements became dislocated, Aaron went looking for more answers and wound up suspecting that he also had an ultra-rare condition called hypophosphatasia.
Concepts discussed on this episode:
- Osteonecrosis (Avascular Necrosis) Explained
- What Is Alkaline Phosphatase?
- Soft Bones, Inc
- National Organization for Rare Disorders (NORD)
- Ultra-rare disease diagnosis is an uphill battle
Find Aaron Blocker on Facebook, Twitter, 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.
Previous Episode
Leaning Into Pleasure With Passion by Kait
February 8, 2021
•42m
During times of stress, our personal relationships may suffer. In the pandemic, we are finding ourselves spending a lot of time with those in our households, and for couples, that can start to take a toll. Certified sex educator Kait Scalisi, founder of Passion By Kait, shares her knowledge and experience as a neuroscientist, public health professional, and couples' counselor to help us understand how to better manage our relationships during the pandemic and beyond.
Concepts discussed on this episode:
- Sexy Truth or Dare Pick A Stick
- How to Be a Good Partner During Quarantine
- How to Keep the Romance Alive Amid the Coronavirus Pandemic
- 3 Fun Sex Ideas for Couples—That You Can Try Tonight
- Mindful Sex Practices
- Sexy Conversation Starter Kit
Find Kait Scalisi, founder of Passion By Kait, on Facebook, Twitter, and Instagram, YouTube, and Pinterest.
Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.
Credits: Theme music, "IBD Dance Party," is from ©Cooney Studio.
Next Episode
Fully Vaccinated Against COVID-19
March 8, 2021
•20m
Telling your Crohn's disease or ulcerative colitis story is powerful. It can be freeing but it can also come with some unexpected side effects.
Welcome back Rosanne Mottola, who originally intended to talk over receiving her second dose of the Pfizer BioNtech COVID-19 vaccine. She told her ulcerative colitis story and about receiving her first dose on Episode 87, "COVID-19 Vaccination With UC Patient Rosanne Mottola." She gives her experience on her second dose, how it affected her, and what her family's plans are now that she's vaccinated.
Additionally, Rosanne had another part of her journey that she wanted to share. She listened to her first About IBD episode (something a lot of guests don't actually do), as did her family. Reflecting on her ulcerative colitis journey brought things back in a fresh way. She tells me how revisiting some parts of her life in this way was both troubling and healing. It's an important part of the disease journey, especially for those who tell their story publicly, that doesn't often get discussed.
Concepts discussed on this episode:
- Clostridium Difficile Infection With Inflammatory Bowel Disease
- Dependent Coverage for Young Adults
- CDC: COVID Vaccine Doses Can Be Spaced Up to 6 Weeks Apart
- You Got Your COVID-19 Vaccine. Now What?
- CDC: Fully Vaccinated People Don't Need to Quarantine After COVID-19 Exposure
- Yes, Social Distancing Does Lower Your Chance of Contracting COVID-19
- Here's Why Your Symptoms May Be Worse After Your Second COVID-19 Shot
- 5 Ways To Prepare for Your COVID-19 Vaccination
Find Rosanne Mottola on Facebook, Twitter, 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.
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