Fabber. Have you ever heard that term? It’s used to describe those with Fabry disease.
I recently spent a weekend with my family and fellow “Fabbers.”
I had many takeaways from this family camp weekend, but one of the highlights was the sense of community. Though we may often feel as if we are alone on this journey, we’re not.
My family and I had lots of fun alongside 31 other families — 140 people in total. That’s 140 people who either have Fabry disease or are a caregiver to a loved one with Fabry disease. So during one weekend out of the entire year, we hung out with 140 people in shoes similar to ours.
Before the family camp weekend, we attended a conference held over a day and a half at a local hotel. The event, organized by the National Fabry Disease Foundation, was very informative. Speakers included physicians, representatives from pharmaceutical companies, and others within the Fabry community. We learned a lot about Fabry and up-and-coming treatments. While the conference was open to all, each camp family was required to have a child between the ages of 6 and 16 with a Fabry diagnosis.
The camp was held at a place called Victory Junction. We were extremely impressed with the facility. One of my kids said, “Mom, this isn’t what I expected at all. It’s so much nicer than camping.” I agreed. It was more like “glamping” — which is my kind of camping. The location had state-of-the-art amenities, and everything was wheelchair-accessible. Each family was assigned a volunteer who was knowledgable about the camp and our prearranged schedules.
We had no dull moments. We fished, boated, crafted, rode horses, bowled, played putt-putt golf, got fancy or wild with makeup and hair color — and my family’s favorite: took archery lessons. In addition to all the fun were meals, talent shows, and dance parties. Looking at the happy faces around me and hearing their laughter made me smile.
The dictionary defines “camaraderie” as “the mutual trust and friendship among people who spend a lot of time together.” I would argue that you can feel camaraderie even if you don’t spend extended time in each other’s company. I believe that you can experience that same feeling over a short duration with those who are on a similar journey.
I am thankful for the National Fabry Disease Foundation and the work it put into the weekend. I appreciate the opportunity to spend time with fellow Fabbers. We are not alone.
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 Services, and are intended to spark discussion about issues pertaining to Fabry disease.
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