Meet family caregiver Adrienne Provost. Adrienne lives in Chicago and is a mother of three children. Her youngest, Caroline, has a rare genetic disorder called Epidermolysis Bullosa, commonly referred to as ‘EB’. In this inspirational episode, we learn more about EB and how this family works together as a team. We also learn about Caroline’s Make a Wish event and the rare disease advocacy work that Adrienne does with Harmony 4 Hope.
Listen to the show: Caregiver Spotlight – Adrienne Provost
Words of Encouragement
Each episode starts off with a few words of inspiration or motivation that is pulled from the Happy Healthy Caregiver Jar.
Links & Resources Mentioned
- Adrienne’s first resource for help came just hours after her daughter was born from Lurie Children’s Hospital of Chicago.
- Adrienne didn’t have the instant internet resources available 13 years ago that are available today. One resource where you can learn more about Epidermolysis Bullosa and the various types is on Debra of America. Patients with EB are called ‘Butterfly Children’ because their skin is as fragile as a butterfly’s wing.
- Adrienne and her husband set boundaries with their family about the amount of information and potential outcomes of this disease.
- Adrienne is a Rare Storyteller for an organization called Harmony 4 Hope. This organization was founded in 2014 for the purpose of using music to fuel scientific discoveries in Rare Disease, educate medical students and uplift children. Adrienne spoke to a group of medical students and staff at Marquette University and will be returning this year for a free event on February 27 (register here).
- Elizabeth learned about Harmony 4 Hope through her little sister Anne who is the owner of Cura Strategies. CURA Strategies is a bipartisan integrated strategic communications agency focused on one thing: transforming healthcare.
- Adrienne contributes much of her sanity in the early years to her supportive tribe of helpers – her husband and her friends and family.
- Caroline was granted a wish from Make-A-Wish America. She was treated like royalty just before her tenth birthday at a One Direction concert and got to meet the band.
- Rare Disease Day is February 28th, 2019. This year’s theme is bridging health and social care.
- The National Caregiving Conference takes place in Chicago and many sessions will be available virtually is Nov 7-10, 2019. This conference is unique in that most of the presenters have been or currently are family caregivers.
- Order your personal copy of the Just for You: a Daily Self-Care Journal which will help you be intentional with your self-care.
- Adrienne and her family organize an annual social event for Midwest families impacted with EB. Learn more on her Midwest EB Picnic Facebook Page. The next event is on August 3, 2019. You can reach Adrienne through Harmony 4 Hope or through her personal Facebook page.
Favorite moments & quotes from the episode
Accepting this is what we’ve been dealt and how do we move forward in the best way possible for our daughter and for the rest of our family is what we have felt is the only path forward.
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