The challenges of growing up with an invisible illness

My oldest sons, twins Michael and Anthony, have Fabry disease. Their symptoms have been present since childhood, but back then, we didn’t know that Fabry was the culprit. The boys’ health issues became more pronounced during their tumultuous teen years, leading to genetic testing for our entire family.

Ultimately, the twins; my daughter, Marisa; and I were all diagnosed with Fabry disease in 2019. Having an answer was a relief. Michael and Anthony started treatment immediately while my daughter and I waited to see if it’d be necessary for us, as neither of us was symptomatic at the time.

When we received the news, I started a CaringBridge page, and emails and text messages abounded for months. Loved ones near and far offered prayers and encouragement. Over time, however, people stopped writing to check on us.

Because Fabry symptoms are largely invisible, it can be easy to forget that the disease rages on and gets progressively worse over time. Out of sight often means out of mind, as is the case with many other invisible illnesses. Many people close to us may not know or remember that every day my kids suffer silently.

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I remember watching Michael and Anthony, now 22, at their high school football games. No outward signs of Fabry distinguished them from their teammates. They were captains, great athletes, and remarkably tough, but it was costly to them to play the game they loved (and had played from age 5 until they graduated high school in 2021). Football season brought neuropathy in spades, often manifesting as severe foot pain, cramps, or burning sensations. Michael and Anthony were barraged with lightheadedness, gastrointestinal issues, and diminished stamina in the Texas heat.

Anthony VanVickle is #55 and his twin brother, Michael, is #4. (Courtesy of Susanna VanVickle)

I wonder how different football would’ve been for them if Fabry were visible. People had no clue that they suffered before, during, and after each game because of the genetic mutation hidden in their DNA.

A teammate might’ve noticed Anthony skip a pregame meal, but he couldn’t see that Anthony was choosing to be famished over needing to use a restroom when one might not be easily accessible. A coach might’ve observed Michael working out his cramps and hydrating, but he couldn’t see the immense foot pain that Michael played through for love of the game.

Most parents would likely agree that raising teenagers is a colossal undertaking. However, the swells and surges of adolescence seem to be exacerbated when Fabry disease is present. The kids are already wrestling with mental, physical, and hormonal upheaval. Often they oscillate between wanting to be invisible and wanting to be seen. Becoming self-conscious at the same time that Fabry symptoms are intensifying can make the teenage years particularly tough.

Marisa VanVickle, far right, bowls with her friends. (Courtesy of Susanna VanVickle)

Marisa, now 14, is blossoming into a young lady. While her appearance blends into a crowd, she feels different because of her genetic condition. The symptoms that were undetectable in 2019 now affect her daily. She seems to be almost as affected by Fabry disease as her brothers were at her age. In addition to the stresses common to middle school girls, she deals with gastrointestinal pain, neuropathy in her feet, heat intolerance, and difficulty sleeping.

It’s true that most 14-year-old girls feel different: They’re changing, figuring out who they want to be, and experiencing new emotions, fears, and thrills. At this stage of development, every day is unpredictable and volatile. So in one sense, Marisa is a normal teenager. (Wait, is “normal teenager” an oxymoron?) At the same time, her “normal” involves much hidden suffering.

Just the other day, I asked her, “Would you rather have an invisible or visible disease?” She quickly responded, “Invisible.” She likes to keep her Fabry private. Sometimes she wonders if people would treat her differently if they knew she had a rare disease. At an age when girls are especially sensitive about how others see them, Marisa is glad that her Fabry disease is hidden.

I’ve been a mom now for 22 years, and I’ve walked with four boys and a girl into the wild waters of adolescence. Because there are few manuals or formulas for accompanying your child through their teens, especially if they have a rare genetic disease, every day is based on trial and error. Through it all, however, I’ve found one thing that remains true: Every day is better when we find something for which to be grateful. Today we’re grateful that our illness is invisible.

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.