Jen Owen is a mito patient and mito mom, joining me to share her personal journey having mito, about her diagnosis journey, her family and how to best advocate for yourself when you’re affected by health issues.
EPISODE HIGHLIGHTS
Can you share about your mitochondrialRelated to the mitochondria. disease journey?
I experienced 15 years or more of misdiagnosis of more familiar conditions. Because doctors were treating something I didn’t have, I now have other medical issues, like Cushing disease, brought on by the use of steroidsThe man-made version of hormones that are naturally made in the body. That are designed to act like hormones to reduce inflammation.. I don’t want my kids to go through what I have and fight for the right diagnosis, medical care, medications and treatments they need. When I was diagnosed with mitochondrial disease, my daughter was experiencing parallel symptoms. After a surgery, she had complications from anesthesia and the doctors and I was later hospitalized with elevated lactic acid levels. My daughter also had high lactic acid levels and we realized that what we were experiencing was likely the same cause.
What is the importance of your kids advocating for themselves?
It’s important to me that my kids know how to advocate for themselves. I want to instill in my kids that this is a fight they’ll have the rest of their lives and they have to advocate for their healthcare and take ownership of their own healthcare and well-being. I also stress the importance of pacing themselves and managing their energy and activities. I try to teach my kids shortcuts in their day-to-day lives because they’ll need the knowledge one day and I had to learn some of these things the hard way.
Can you tell us about Buddy Ball?
Our family is passionate about softball and Buddy Ball is a program where kids of any level or disability are able to play on a team. It doesn’t matter if the player is in a wheelchair, is on the spectrum, has a j-tube or portA device for delivering liquid nutrition or treatments into the circulatory system, consisting of a small receiving chamber implanted under skin of the chest, connected to a narrow tube that empties i, or if they’re verbal or non-verbal. Anyone can play and no one is excluded. We play one game a week and we don’t keep score. We partner each player with a peer, or buddy, that does anything the player can’t do on their own. The kids are amazing and such an inspiration.
LINKS & RESOURCES MENTIONED
Buddy Ball gives kids with disabilities a chance to play ball in Brooksville
Hernando County’s Buddy Ball is one step closer to getting mats for players
Hernando County’s Buddy Ball program gets mats to help players
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