My name is Adam Johnson. I’m typically pretty quiet when it comes to talking about myself. That’s been the case all of my life, especially since March, 2019. That's when I knew something was wrong. Many tears, frustrations, appointments, and symptoms later, I finally found out why. In October, 2019, I was diagnosed with mitochondrial myopathy. In August, 2020, I found out I have a condition that seems to be related called extrinsic restrictive disease.
These diagnoses were just a part of the journey, but really confirmed what I figured: my world would not be the same. It had been turned upside down. I went from being what I thought was a healthy 35 year old with an exciting path ahead of me to wondering what could have been. This website and my blog originated as a part of my plan to own my story. It’s not pretty. It’s definitely not perfect. And it is way more real than I want it to be. But it is my story. It is something I’ll always have. And I’m finally on board with my story being something to own.
The story is not over. This is why I’d like to add to it by combining something I know I love, being a Dad, with something I think I’ll love, being an Advocate for rare disease. That’s how this whole thing started, really. It has been, and will continue to be, quite the journey. Thank you for being here as I work to Own My Story.