Jacob and CPEO Plus

ENERGY IN ACTION - EPISODE 061

Jacob Shinder and CPEO+

Jacob Shinder is a 22 year old college student who was diagnosed with CPEO+ at the age of 12. He joins us to talk about his experience and how it has shaped his goals for the future.

EPISODE HIGHLIGHTS

What is CPEO?

Chronic progressive external ophthalmoplegia (CPEO) is a drooping of the eyelids. I have CPEO+ which also causes overall body weakness, affecting my stomach and bowels, muscles and brain.

What symptoms were you experiencing that led to your parents seeking out a diagnosis for you?

In middle school, I'd often see double, which would come on and go away often. I went to the nurse one day when I could only see double in class. My mom reached out to my pediatrician initially and eventually was seen by multiple specialists. Eventually a muscle biopsy led to a diagnosis.

What is your current treatment for CPEO?

I take the mito cocktail, a lot of vitamins and medication for my heart.

What was school like for you?

In middle school and high school, I had an IEP which allowed for extra time on tests. More difficult than any academic struggles was the social aspect with kids asking me questions and teasing me. One of the better decisions I made was to participate in graphic design classes for half the day at a local technical college. I also worked part time through school.

What are you up to right now?

I just graduated college and I'll be going to NYU in the fall for social work. I work with a developmentally disabled person to take care of them through the day. I really want to help people and I feel like social work is a great way to do that.

CONNECT WITH JACOB

Facebook

https://www.facebook.com/jacob.shinder

CONNECT WITH MITOACTION

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https://www.mitoaction.org/

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