Life must go on, even when Fabry disease symptoms flare up

Picture this: I was soaking in the panorama of emerald mountain peaks framing the blue waters of Lake Amatitlán in Guatemala, where my friend and her groom were kicking off their wedding festivities with friends, food, and music. The event was exceptional, but I was feeling off. An unease had a hold on my body, and the low churning discomfort in my gut made it hard to enjoy the party.

I am a 46-year-old with Fabry disease. Miraculously, however, I have never experienced Fabry symptoms, so I wonder if food poisoning caused the queasy feeling that upset my Guatemalan getaway.

Until that point, our time had been magical, a most anticipated escape for my husband, Mike, and me. Colonial-style hotels, luxurious restaurants, hiking, sightseeing, visits to centuries-old churches, and stunning vistas of rolling verdant mountains, waterfalls, lakes, and jungle all were on my list of blessings from this special vacation. But once I started to feel awful, I would have considered trading those blessings for the chance to curl up in my own bed.

I hid my discomfort from the celebrated couple and their family. A few companions, however, sensed my need and offered various remedies, but nothing brought relief. Hardly keeping my mind off my stomach, I did my best to smile and engage, while constantly visiting the bathroom.

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Mike VanVickle, right, takes in the view of Lake Amatitlán in Guatemala. (Courtesy of Susanna VanVickle)

That experience gave me a deep sense of empathy for my children with Fabry. My oldest sons, twins Michael and Anthony, as well as my youngest daughter, Marisa, face ongoing stomach pain due to Fabry disease. They have mentioned feeling “awful” or “unsettled” without going into much more detail. I couldn’t relate — not until my last two days in Guatemala.

After surviving the lovely afternoon at the lake house, I was happy to make it to the hotel and I attempted to get to sleep early. Yet I was up throughout the night with nausea, vomiting, and more.

The next day was the wedding in Guatemala City. It was a very rough morning for me. Although I didn’t want to move from my bed, I forced myself to get up, get ready, and attend the wedding mass and my friends’ extravagantly beautiful mountaintop reception.

I wanted to show up fully for the occasion, but I was hanging on by a thread. I couldn’t eat more than a bite of the exquisite food, and the only beverage I consumed was chamomile tea. I binged on the chewable antacids provided in the ladies’ room and managed a few dances on the dance floor, but my insides were out of sync.

A newfound admiration for those with Fabry

I share these vulnerable moments because they gave me a taste of the symptoms that are common in Fabry disease. But from what my kids tell me, the awful, sick feeling usually isn’t enough to stop what they’re doing. Instead, they go through the day with an underlying storm in their guts. Often the storm is an obstacle to concentration or enjoyment, but they are used to it.

I recall a specific instance when my boys, then in middle school and not yet diagnosed with Fabry, were excited to travel to Louisiana to spend the “best week of their life” at a summer camp. That week Anthony was plagued with his usual gastrointestinal issues and found himself frequently isolated in the restroom or discreetly chugging his contraband Pepto Bismol. Yet, he still managed to make the most of his camp opportunity.

When I was vomiting in the middle of the night, I thought about Anthony. There were countless nights during his childhood and adolescence when he was vomiting while everyone else slept. To this day, my heart aches for that precious boy who stopped waking his mama, because I was so tired and he was throwing up constantly.

Nausea, bloating, and diarrhea can ruin an otherwise fantastic occasion, but these symptoms are frequent offenders for those with Fabry disease. So it can be daunting to make fun plans knowing that the storm might strike at any time, and needing access to a restroom can limit activities.

I have a newfound admiration for my kids and others with Fabry disease who persevere through continuous and disruptive sickness. I applaud Michael, Anthony, and Marisa for counting their blessings and letting the beauty around them speak louder than the discomfort within.

Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.