TRAILER - PARENTS AS RARE
I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms and after the diagnosis of a progressive mitochondrial disease with no treatment or cures, the isolation was almost as excruciating as the symptoms. I felt alone in so many ways, but in particular as a parent. I knew I couldn't be the only person with a rare disease who was trying to raise children, but it felt like I was. Without the community I was seeking, I decided to build it myself. Living life as a parent with a rare disease can be paradoxical. We laugh and cry, we're vulnerable and scared, we're brave and afraid- all at the same time. Parents As Rare, a series brought to you by the Energy In Action podcast, is a community where parents who have a rare disease or chronic illness can connect, share, support and be supported.
CONNECT WITH MITO ACTION
Website
https://www.mitoaction.org/
Facebook
https://www.facebook.com/mitoaction
Twitter
https://twitter.com/mitoaction
Instagram
https://www.instagram.com/mitoaction/
LinkedIn
https://www.linkedin.com/company/mitoaction
