ENERGY IN ACTION – EPISODE 078
Marcy Young – Living with CPEO
Marcie Young is a young adult who is impacted by CPEO and lives near Cleveland, Ohio.
Can you share about your diagnosis journey?
My whole life, my mom seemed off and it continued to get worse as I got older. She was diagnosed with muscular dystrophy, but I felt like more digging needed to be done. When I graduated college, my mom had suffered a lot of physical setbacks, so I met with a neurologist at the Cleveland Clinic and described what my mom was experiencing. I was diagnosed with CPEO and my neurologist worked with my mom’s doctor to also match her bloodwork.
As your mom progressed, what did that look like and what were some of the symptoms?
My mom had a pretty complex case, her eyes didn’t move at all- they were completely stationary. She was very fatigued and had difficulty walking.
What was that like for you, knowing the challenges that your mom was facing, and knowing what you would potentially also experience?
It is very hard to not take to heart what a difficult time my mom had, and I was very irritable in my twenties. I had a lot of fear because I had a front seat to what could potentially happen to me. We had beautiful moments in our last couple of years together, but we had some really tough ones.
How do you manage a marriage given the impact that having a rare disease has on a partner?
I’m very lucky to have such an amazing husband. We’ve made some modifications around our house to help me live more independently, and a lot of those have been his ideas. He’s not just my husband, he’s my best friend and my teammate in this, and he was with me as my mom had her largest setbacks.
Did your diagnosis play a role in your decision to have kids?
We met with a specialist who talked to us about an opportunity to take my embryos to a lab and ensure that my child would not have CPEO. We talked a lot about it and we chose not to go in that direction and to have children naturally. Fortunately I was able to carry a child two times. My kids are so young, they have not yet been tested.
Tell us a little bit about what your experience has been with clinical trials?
It’s not a question of whether I will or won’t participate. The first trial was a shot every day for 14 months until the trial ended, and it was painful. The trial that I’m currently on is three pills a day, so it’s not as intrusive.
What would you say to a patient who is hesitant about participating in a clinical?
I would want people to think about it from the opposite direction. If the generation before us were to have had the opportunities to be in these trials, and if they didn’t take advantage of it and we’re suffering because of a lack of interest from them, let’s try to not create that situation for the generation after us. The trials that we’re doing right now, depending on your age and symptom severity, could still very well help us.
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