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Meet Lauren Pires: “When I was born, I didn’t cry and couldn’t move my limbs. I spent my first two months of life in intensive care, at one point went into cardiac arrest and doctors didn’t think I was going to live. When I was 10 days old, I had my first muscle biopsy. I have a three-inch scar on my leg from it which grew with me. For many years, I was very self-conscious about it, because to me it was a telltale sign of my disability, so I didn’t even wear shorts in public until my late 20’s. I had another biopsy at 12 and was misdiagnosed. They told me categories of what my condition could be, which ended up being wrong. With no diagnosis, I had nothing to research to learn more about my body or find community or support groups. My accurate diagnosis of central core disease didn’t come until I was about 20 years old.
Central core disease (CCD) is a rare neuromuscular disorder characterized by missing mitochondria in muscle cells, making it difficult for the affected individual to convert food into energy and strength. Primarily manifesting as muscle weakness, CCD typically remains undiagnosed until later in life due to its rarity. CCD affects everyone differently, but for me, when I eventually did a strength test in my mid-20s, it was revealed that I have about 33% of the strength of an average person, leading to challenges in physical activities and daily functioning.
In school, I had trouble with physical activities that seemed normal and average to others. I was exempt from gym class in high school because I wasn’t physically able to participate. Sadly, I had no diagnosis for it then, and so could not explain it to people, and neither could my family—no one knew why my muscles were weaker. The lack of a diagnosis was a significant challenge during my childhood which was confusing and frustrating, but I never really liked to acknowledge those feelings. I’ve always looked for the good in things, finding optimism and positivity as a survival mechanism. Focusing on things that made me happy or kept me going has been crucial, despite the many challenges and frustrations.
Lauren’s motivation to openly discuss her CCD
I entered an inspirational speaking competition called Speaker Slam where I encountered other speakers sharing their life stories, and a few sharing their experiences with disabilities. This inspired me to speak out about my own journey with CCD. Witnessing their courage, I was really touched and realized the value of representation for individuals with disabilities. I felt very liberated in September 2022 after I came out about my disability and how it affected my life publicly for the first time in a speech. Lots of support and encouragement followed. I don’t think I realized how much energy I was putting into hiding it, and I did that because I was worried people would see me differently. It didn’t occur to me at the time that there were other people who would relate and feel the same. Now I really love encouraging people to share their stories.
How CCD affects her day-to-day life
It makes everyday tasks more challenging, requiring careful planning and time management. I often need to prioritize activities and allocate time for rest due to fatigue and muscle weakness. For example, I generally can’t plan to do groceries, vacuum and cook two meals in the same day, because that’s just too much. While I can still engage in various activities, overexertion can lead to discomfort and increased fatigue.
CCD and fearless travel
Plan, plan, plan. This is the secret to fearless travel!
While CCD doesn’t necessitate specific accommodations, careful planning is essential to managing fatigue and discomfort during travel. I never really travel solo (unless I’m meeting people in the destination) because it’s difficult to lift and carry suitcases, and I typically plan activities with consideration for my pace and energy levels. Communicating with my travel companions helps, in case plans may have to be adjusted to accommodate my needs, like taking a cab or Uber instead of a long walk somewhere.
I love to travel, and cruises are one of my favourite vacations because you can adjust the pace to what you want. But the unexpected sometimes happens, as it did on a recent Caribbean cruise with friends, when I had to speed-walk back to the ship after an offshore trip resulted in us having only five minutes to get back to the ship before it left port. Lack of planning and unavoidable delay from a restaurant and taxi ride back was the cause, but generally I would meticulously plan to avoid these circumstances as my legs and back were pretty sore after.
I lived briefly in Switzerland with my family and while there, we visited England, Italy and Paris. In the U.S., I’ve visited Antelope Canyon in Arizona, Zion National Park in Utah, both of which are beautiful. On that same trip, I visited Las Vegas and loved it.
Managing fatigue or discomfort during long journeys
I pace myself, communicate my needs to travel companions and prioritize rest when necessary. While I strive to participate in activities, I’m mindful of my limitations and adjust plans accordingly to ensure a balance between enjoyment and self-care.
Fatigue during travel varies depending on the activities planned. For leisurely trips with minimal physical exertion, fatigue may be minimal. However, more strenuous activities or extensive sightseeing can result in increased fatigue, requiring careful management and self-awareness.
Usually, I’ll get muscle pain or body pain in my shoulders, lower back and legs. I always make sure to have pain relief medicine with me when I travel.
Travel tips for those living with CCD
Pack comfortable shoes. I’m generally a flats kind of girl, but I know they’re not that unsupportive. Recently I’ve been wearing more stylish running shoes (I have some sparkly ones!) so that I can plan to do more on my feet if we’re walking around.
Time management. You don’t need to schedule every single thing you’ll be doing, but you should have an idea of when the busy periods are and when there would be time for you to rest a little bit more, like sightseeing days vs lounge-y days.
Plan low impact activities. Exploring different coffee shops or dessert places, checking out different shopping areas, or having a beach day are all activities that still allow you to see different places, but can be more self-paced or relaxed than some others. Catching a theatre, musical or cabaret show is great too – you’re entertained but sitting the whole time!
The benefits of travel
I love trying different or interesting food when I’m travelling, looking up reviews of places or finding articles of recommendations or what’s known in the area. I also love seeing new things, especially in nature like national parks or landmarks. And it’s fun to have new and exciting memories with whoever you’re travelling with.
My definition of a luxury vacation
To me, a luxury vacation includes not having to cook or worry about food, having a reason to dress up, and being able to go at my own pace. I like cruises for those reasons, and all-inclusive resorts are good for that too. I’m also happy just staying in a nice hotel and exploring restaurants or cafes in the area. And anywhere with beautiful scenery is always a plus.
Message for those out there facing similar challenges
The main thing I’ve learned is that strength comes in many forms. My muscles may be weaker, but living with that has made my determination and resilience stronger. There are lots of people who are ashamed of something in their life that they can’t control, but if they’re brave enough to openly share their story, they are certain to find support and acceptance from people who relate. I hope that from sharing my story, people can see that it’s possible for them to share their story too, whether it’s disability-related or not—something I’ve only realized and put the pieces together on in the last couple of years as I’ve done more speaking engagements.“
Watch her winning Speaker Slam speech here.
Her story has been featured on prominent news channels such as CityNews Toronto, OMNI News and Global News.
Notably, Lauren’s achievements include finishing second in North America’s Largest Inspirational Speaking Competition Finals to take home the title of Inspirational Speaker of the Year and being the first Canadian recipient of the “But You LOOK Good” Inspiration Award from the Invisible Disabilities Association.
Lauren lives just outside of Toronto, Canada.
Her website: laurenpires.ca