How one Fabry family stands together through joy and pain
A columnist explains how Fabry disease is woven into the fabric of her household
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Dallas residents are all talking about the unrelenting heat this year, as we’ve logged 52 days over 100 F. Besides the physical effects of bone-dry lawns, cracking foundations, and blistering-hot sidewalks, there are scary yet less visible effects of the heat wave on public health.
Local officials warn of elevated risk of heat-related medical emergencies. For Texans with Fabry disease, the temperatures are a force to reckon with.
The silver lining for my family is that, because four of us have Fabry disease, our pack mentality helped us survive the brutal summer. I’ve learned that the solidarity built into our family’s genetic disease prevails over the pain and suffering endured by each individual. Yes, the weight of the disease is heavier when it is affecting more than half of our family, but the shared burden is somehow lighter, because it isn’t carried alone.
Psychological sciences have emphasized the benefits of friendship with people who suffer from the same chronic or rare disease, and experience has shown me what a joy it is to connect with a tribe of people who understand Fabry disease. In fact, as a columnist for Fabry Disease News, I’ve issued the clarion call to seek out opportunities to connect with other members of the community. (I’ve also shared how I relished a lunch planned by the Fabry Support & Information Group specifically for that purpose.)
Today, however, I am marveling at the gift of the Fabry tribe that is our family. My three kids have each other to talk about their symptoms, and the rest of the family — even those without Fabry disease — can join the conversation because Fabry is woven into the fabric of our household.
Conversations around the dinner table might take a turn to unsavory topics such as bathroom-seeking or gas pain, but we aren’t disgusted by the reality of what greasy meat can do to a family member. Humor is a large part of the VanVickle family scene, and what Fabry disease looks like behind closed doors can bond us all through cathartic laughter.
When a kid isn’t laughing through the pain, they can find comfort in talking through an issue with a brother or sister who has seen them at their best and at their worst. The kids can be themselves without having to explain why they want to pass on certain activities or foods. Home is a place where Fabry is not a bad word, and it doesn’t make you stand out.
Seven years ago, we wondered what our family would look like with multiple diagnoses under one roof. Now we know: We look like us. Being a Fabry family is who we are. It’s in our DNA.
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.
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