A Rare Disease Patient – Realities, Optimism, Advocacy & Wisdom

May 14, 2024 /

This episode contains a powerful story of resilience through the challenges of battling a rare disease. Amy Gietzen has done this for over 20 years, as she’s become one of the foremost advocates for Scleroderma patients.

She is a patient ambassador for Patients Rising, a community outreach volunteer at Steffens Scleroderma Foundation, advocate for the National Scleroderma Foundation, and more. She shares so much in this episode and there’s no doubt you’ll walk away knowing you just spent 12 worthwhile minutes listening to a special human being!

We hope you’ll enjoy watching this episode!

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Todd “TJ” Keitz has been primary caregiver and patient advocate since June 2018 for his parents, who each are faced with serious illness. This journey led him to create the blog www.1day1week.com, this YouTube channel Caregiving Insights, and the My Care Friends website for caregivers and patient advocates — to connect, share, and support each other!

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CAREGIVING INSIGHTS AND MY CARE FRIENDS LLC EXPRESSLY DISCLAIM ANY AND ALL LIABILITY OR RESPONSIBILITY FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, CONSEQUENTIAL OR OTHER DAMAGES ARISING OUT OF ANY INDIVIDUAL’S USE OF, REFERENCE TO, RELIANCE ON, OR INABILITY TO USE, THE PODCAST EPISODES OR THE INFORMATION IN THE EPISODES.