Mo has Maternally Inherited Diabetes and Deafness (MIDD), caused by a mutation in his mitochondrialRelated to the mitochondria. DNA. Mo is married, in his 30’s with two children and he joins me to tell his story and to share his diagnostic journey.
EPISODE HIGHLIGHTS
Where did your diagnostic journey begin?
I first noticed that I was struggling to hear about the age of 26, and had the standard hearing test done, which revealed significant hearing loss in a high-frequency range. I got hearing aidsA small device that fits in or on the ear, worn by a partially deaf person to amplify sound. to help improve my hearing ability. About six months later, I learned my sugar was high at a routine physical and I was prescribed medication for pre-diabetes. I met with a geneticist and an endocrinologist and was later diagnosed with mito 11 years later, which explained the existence of two separate health issues.
How do you deal with hearing loss in your day-to-day?
As advanced as hearing aids are, hearing is always on my mind, from worrying about my batteries lasting to hearing in certain instances. When my wife isn’t home, I worry about not hearing my children in another room, especially overnight when I’m not able to hear without my hearing aids.
How transparent are you with your children about your diagnosis?
My daughters are 5 and 7 and they know I have challenges, but they’re too young to understand all the specifics. I use a CGM, which is a monitor in my arm, and we call it a sugar button. They know that when my sugar is low, my sugar button will beep, and they like to let me know when it sounds. They also know I have a gross medicine, my mito cocktail. And they know about my hearing aids and that if I don’t have my ears in, they have to be really loud and talk right into my ear.
Are there additional MIDD symptoms that you don’t experience?
It’s been a challenge to find other people like me. I have connected with people through MitoAction, but I’m the only one with my condition. I haven’t had a drastic progression over the years, so it’s hard to say what will change in the future.
CONNECT WITH MITOACTION
Website
https://www.facebook.com/mitoaction
https://twitter.com/mitoaction
https://www.instagram.com/mitoaction/
https://www.linkedin.com/company/mitoaction
