Sometimes progress in healthcare begins with research.
And sometimes it begins when someone tells their story—and we listen closely enough to recognize that there may be an important question hiding within it.
That is one reason I was drawn to participate in the 2026 LymeX Healthathon, a national initiative designed to elevate the lived experiences of patients, caregivers, clinicians, and others affected by Lyme disease, tickborne conditions, and complex chronic illness.
The goal is not simply storytelling for storytelling’s sake. Real-world experiences can reveal patterns, unmet needs, and questions that may otherwise be difficult to see.
For me, one of those questions involves alpha-gal syndrome.
Why Alpha-Gal Belongs in the Tickborne Disease Conversation
Alpha-gal syndrome, or AGS, is a potentially serious tickborne allergy to a molecule called alpha-gal, which is found in most non-primate mammals.
It is sometimes described simply as a “red meat allergy,” but that description does not fully capture what living with alpha-gal can involve.
Depending on individual sensitivity, navigating AGS may require careful attention to things such as mammalian meat and other foods, dairy products for some individuals, gelatin and mammalian-derived ingredients, certain medications and supplements, restaurant meals, travel and social gatherings, and future tick exposure. Even a vegan diet may not eliminate every possible concern. Carrageenan, a red-seaweed-derived ingredient used in some plant-based foods, has been discussed as a possible trigger in a small subset of people with alpha-gal syndrome. In my own practice, one patient described an apparent reaction during a beach exposure involving Irish sea moss—another reminder of how difficult identifying potential triggers can sometimes be.
And alongside those practical concerns can come something much harder to measure: the mental load of constantly wondering whether something is safe.
In my clinical work with people affected by alpha-gal, I have heard about fear, hypervigilance, frustration, social limitations, and lives increasingly organized around avoiding a reaction.
That lived experience matters.
Alpha-Gal Is More Than Food
For my Healthathon submission, “When Hope Returns After Alpha-gal,” I shared the experience of one family who generously gave me written permission to tell their story anonymously.
Their daughter had experienced years of gastrointestinal symptoms, food restrictions, medical evaluations, and uncertainty. Her family kept searching for answers while trying to understand why ordinary foods could lead to such difficult experiences.
What stayed with me most, however, was not simply what she was eventually able to eat.
It was what her mother said about how life felt different:
“She finally feels included.”
That sentence captures something a laboratory value cannot.
For a child, eating is woven into birthday parties, school events, vacations, family dinners, celebrations, and simply being one of the kids.
When illness changes someone’s relationship with all of those things, improving quality of life can mean far more than changing a food list.
A “Glimmer of Hope”
After years of searching, this family pursued Soliman Auricular Allergy Treatment (SAAT), an auricular acupuncture approach being used by some practitioners for allergy-related conditions.
Following treatment, KJ’s mother reported that foods that had previously caused problems were no longer producing the symptoms their family had come to expect. She described her daughter eating foods she had avoided for years, feeling less different from other children, and participating more freely in everyday life.
Her mother called finding this option “a glimmer of hope.”
Their experience was incredibly meaningful to their family. But it is also important to be clear about what a story like this can—and cannot—tell us.
One patient’s experience does not establish that SAAT is effective for everyone with alpha-gal syndrome.
Instead, experiences like this make me want to ask better questions:
Can we measure what is happening?
Can these results be reproduced?
Who may benefit?
How durable are the changes?
And why might they occur?
Those are research questions.
And I believe they are questions worth asking.
Where Lived Experience and Research Meet
Evidence-based healthcare and patient experience should not have to compete with one another.
Patient stories can help generate hypotheses. Clinical observations can identify signals worth investigating. Rigorous research can then help us determine whether those signals represent meaningful, reproducible effects—and where the limitations lie.
This is particularly important when people living with complex or poorly understood conditions feel that the options available to them are limited.
We should neither dismiss encouraging clinical observations simply because we do not yet fully understand them nor accept them uncritically because the outcome is compelling.
We should get curious and study them well.
That is one of the ideas I most wanted to contribute through the LymeX Healthathon.
Why the LymeX Healthathon Matters
One thing I appreciate about this initiative is the recognition that patients, families, and clinicians may see pieces of the healthcare puzzle that are difficult to capture through traditional research alone.
Lived experience does not replace science.
It can help tell us where science needs to look next.
For alpha-gal syndrome in particular, I would like to see greater awareness of the full burden of the condition, better support for affected individuals and families, and thoughtful research into approaches that might one day expand the options available to them.
Most of all, I want people living with alpha-gal to know that their experiences matter—and that hope and scientific curiosity do not have to be opposites.
When Hope Returns After Alpha-Gal
Community voting is now open for the LymeX Healthathon, and my submission, “When Hope Returns After Alpha-gal,” is available to read and watch.
If you would like to support the story, I would be grateful if you would:
- Read or watch the submission
- Vote for it if it resonates with you
- Leave a thoughtful comment about what stood out to you or why greater awareness and research in this area matter
- Share it with others who may be interested in alpha-gal or tickborne conditions
View “When Hope Returns After Alpha-gal”: https://lymex.crowdicity.com/post/891694
I also encourage you to explore the stories shared by other Healthathon participants. There is tremendous value in hearing directly from people whose lives have been affected by tickborne and complex chronic conditions.
Sometimes a story offers comfort.
Sometimes it raises awareness.
And sometimes it gives us the next question worth investigating.
Sources & Further Reading
For reliable information about alpha-gal syndrome and the LymeX Healthathon, I encourage readers to explore these resources:
Centers for Disease Control and Prevention (CDC). About Alpha-gal Syndrome.
An overview of alpha-gal syndrome, symptoms, tick exposure, diagnosis, and management.
https://www.cdc.gov/alpha-gal-syndrome/about/index.html
Centers for Disease Control and Prevention (CDC). Fast Facts: Products That May Contain Alpha-gal.
Information about mammalian-derived foods, ingredients, medications, and other products that may be relevant for people living with alpha-gal syndrome.
https://www.cdc.gov/alpha-gal-syndrome/data-research/products-containing-alpha-gal/index.html
National Institutes of Health (NIH). LymeX Healthathon.
Information about the national LymeX initiative and its emphasis on lived experience, tickborne conditions, innovation, and shared learning.
https://www.nih.gov/challenges/lymex-healthathon
LymeX Healthathon. When Hope Returns After Alpha-gal.
My Healthathon submission exploring one family’s experience with alpha-gal syndrome, quality of life, hope, SAAT, and questions for future research.
https://lymex.crowdicity.com/post/891694
About the Author
Sarah Giardenelli, ND, MSOM, LAc, is a naturopathic doctor and licensed acupuncturist at Collective Health Center. Her clinical work includes individualized naturopathic and acupuncture care for people with complex health concerns, including alpha-gal syndrome and other allergy-related conditions.
Medical Disclaimer
This article is for educational and informational purposes only and is not intended to provide medical advice, diagnosis, or individualized treatment recommendations. The experience described here represents one family’s reported experience and should not be interpreted as evidence that SAAT will produce the same results for others. Alpha-gal syndrome can cause serious or life-threatening allergic reactions. Individuals with known or suspected alpha-gal syndrome should work with an appropriately qualified healthcare professional for diagnosis, risk assessment, and management.
