Finding my tribe at FSIG’s recent Fabry community get-together
We were empowered by knowledge, encouragement, and newfound friendships
Written by |
I was met with warm and welcoming smiles when I walked into a boutique hotel near Dallas, Texas, for the recent Fabry Support & Information Group (FSIG) Get Together. There, I spotted a familiar face standing next to a display table. It was Nancy Ngotho, the senior patient education liaison at Sanofi who first educated our family about Fabry disease.
We enjoyed catching up on life updates, including the past several years of my children’s Fabry story.
Then, I bumped into Caren Swift on my way to the buffet. She is a highly skilled research nurse who oversaw the administration of the first enzyme replacement therapy that my boys, Michael and Anthony, received in 2019. She has followed my twins’ treatment journey ever since, and her unparalleled expertise in Fabry patient care has been an enormous boon for my family. As we filled our plates with fresh salad, delicious meats, and buttery rolls, we reminisced about my sons’ first infusions, their infusions at out-of-state colleges, and their participation in clinical trials.
The luncheon began with an introduction by Lisa Bacon, who is both a Fabry patient and the director of programs at FSIG. She described how the organization was founded and invited us to engage in the community-building opportunities it offers. Next came the guest speaker, Ankit Mehta, a local nephrologist who spoke knowledgeably about kidney health and Fabry disease management. Mehta has played a vital role in my sons’ health journeys, overseeing their healthcare for the past several years. Our family is truly fortunate to have him!
From left, Nancy Ngotho and columnist Susanna VanVickle catch up at the FSIG Get Together on March 7, 2026, near Dallas. (Courtesy of Susanna VanVickle)
After formal presentations from FSIG, Mehta, and other Fabry disease community leaders, we went around the room introducing ourselves and telling snippets of our stories. Seven Fabry disease families were represented at the gathering, and many had never met another person or family with the disease. We delighted in the instant camaraderie of shared experiences.
Fabry patients of all ages, accompanied by their spouses, parents, and children, leaned into the conversations. Some spoke about years of agonizing misdiagnoses, while others discussed the overwhelming burden of consistent symptoms like neuropathy.
In that safe space, we were able to talk about things we usually keep to ourselves. Where else can you open up about not knowing what it’s like to live without constant diarrhea and having to always know where a restroom is? Where else can you describe the burning sensations in hands and feet, the fever flare-ups, and the ringing of the ears and see everyone nodding along in agreement? It was gloriously refreshing to encounter a world where understanding and solidarity are possible.
Some of the stories were surprising. For example, a woman sitting next to me lost her husband because of Fabry, and all nine of his siblings have the Fabry gene mutation. What are the odds? A toddler with Fabry winced and cried from pain in her feet due to neuropathy. Can symptoms really start that young? Some patients spoke of unconventional remedies that offered symptom relief. How is it that what works for one person with Fabry disease might be useless to another? As questions like these emerged, we received excellent answers from the professionals in the room.
Throughout the meeting, I filled several pages with notes, jotting down health-management strategies, treatment options, resources, other events, and contact information. I left the hotel with stacks of newsletters, booklets, and business cards, and a heart filled with fresh hope. The hours passed quickly, and the meeting left a lasting impact on everyone who attended. I believe each of us felt empowered with knowledge, encouragement, and newfound friendships built on mutual understanding.
Nephrologist Ankit Mehta delivers a presentation on Fabry disease, from diagnosis to management, at the FSIG Get Together on March 7, 2026. (Courtesy of Susanna VanVickle)
In a column I wrote back in January, I expressed a longing to communicate personally with readers and to hear about your Fabry struggles, hopes, and complaints. That invitation still stands, but after the enriching experience at the Fabry Get Together, I’m excited to share the good news that FSIG exists to help Fabry families and individuals connect. I now have people in my tribe who understand me!
As the FSIG website notes, “By bringing people together closer to home, FSIG’s Regional Meetings foster meaningful connections, share vital resources, and strengthen the Fabry community nationwide.” I’d encourage you to engage in whatever way you can. Tap into the resources. Explore the wealth of information available about our rare disease. And find a meeting near you or request one — you won’t regret it.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.