Melissa’s March to Cure MELAS

Woodbury resident Melissa Kieffer says she knows it’s a mouthful.

She has mitochondrial encephalomyopathy lactic acidosis stroke-like episodes (MELAS), and has faced many challenges since being diagnosed with the disease.

Kieffer is raising money for research and participating in the United Mitochondrial Disease Foundation’s Energy for Life Walkathon on Aug. 17.

Woodbury Patch asked her about the upcoming event and her battle with MELAS.

Patch: What's it like for you having MELAS?

Kieffer: It had changed my life because the mitochondrial disease affects me in many ways and it is different from day to day. MELAS stands for mitochondrial encephalomyopathy lactic acidosis stroke-like episodes. That’s a mouthful, but basically, it can attack any part of my body: brain, muscles, organs, etc. Physically, I have to take a lot of vitamins daily to help me have energy. This is why we call the walk “Energy for Life.” The mitochondria is the powerhouse of the body.  

When I was first diagnosed, it was scary and I didn’t know what to expect. Many things suddenly changed: I needed to quit college, I couldn't drive anymore, and I had to quit my job because the disease makes me fatigued, I cannot do multi-tasking, and I need time to process directions and make decisions. Driving is impossible because I would need to make split-second decisions. I can’t do that anymore, so it is just too dangerous to be behind the wheel.  

A few months afterwards, our family got a new puppy. She has helped get me going.

I would say do not look at the internet to explain what MELAS is because every person who has mitochondrial disease is very different.  We all have different symptoms and handle the situations differently. My family is very supportive and I live in a relatively stress-free home, which helps my condition.  

Patch: How are you feeling these days?  

Kieffer: I feel better in a few ways—not 100 percent better daily—but things have improved, like stress levels in life are managed. Each day I feel a little different because sometimes the disease affects me physically, so I might have a headache or muscle pains. Other days, the disease can affect the way my brain interprets life, so I might feel really happy or grumpy.  

Patch: How is the fundraising going?  

Kieffer: Pretty well. My parents have a network of people they have contacted, and I have little information cards that I pass out to people when I talk with them. I also passed the cards out in my neighborhood. So, just through contacts and word of mouth, many people are becoming aware and supportive.

Patch: How can people help?  

Kieffer: Donate for research! Check the website.

You can join the team just to show support, plan on walking with us on the 17th of August, or donate through my page, Melissa’s March to Cure MELAS.

Come and walk with me and my friends and family because that is how we grow awareness. The walk is not very far, and since people with mitochondrial diseases don't have much energy, the walk will be slow.  

Patch: Anything else you'd like to add?  

Kieffer: The most important thing is to get people to learn about mitochondrial disease: its symptoms, diagnosis, and management. The genetic research is very important because once a cure is found, there are endless possibilities to find cures for other genetic diseases like Parkinson's, Alzheimer's, MS, and some cancers just to name a few.

Thank you for giving me this opportunity to share my story so that we can increase awareness about mitochondrial disease.

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