Success StoryAlpha-gal Syndrome: Addressing Kentucky’s Growing Health Concern
Alpha-gal Syndrome: Addressing Kentucky’s Growing Health Concern
Author: Heather Norman-Burgdolf
Planning Unit: Dietetics and Human Nutrition
Major Program: Active Living and Health Promotions General
Outcome: Initial Outcome
Relevance:
Although still considered "rare" compared to other medical issues in Kentucky, the state has one of the highest rates of alpha-gal syndrome (AGS) in the U.S., with some counties reporting the highest cases per capita, according to the CDC. AGS develops in some individuals after being bitten by a lone star tick. There is no known treatment, but symptoms can be managed through lifestyle changes. This includes eliminating exposure to the alpha-gal allergen found in foods (e.g., beef, pork), ingredients, and byproducts (e.g., gelatin) derived from mammals. In addition to dietary adjustments, hidden sources of the allergen in medications and personal care products can also trigger reactions. These changes may feel overwhelming for those newly diagnosed. Moreover, preventing tick bites is crucial to reducing new cases and avoiding heightened symptoms. However, few evidence-based resources are available to help Kentuckians navigate prevention, diagnosis, and management.
Response:
Kentucky farmers, producers, and other concerned Kentucky residents prompted a collaborative response from the University of Kentucky Cooperative Extension Service to provide reliable information about AGS. To address the need, the UK Department of Entomology (Drs. Hannah Tiffin and Jonathan Larson), UK Department of Dietetics and Human Nutrition (Dr. Heather Norman-Burgdolf), and the UK Nutrition Education Program (Heather Shaw) came together to host a 90-minute statewide webinar on May 29th, 2025, covering AGS basics, symptoms, diagnosis, lifestyle management, and tick bite prevention. Technical webinar support was provided by UK Family & Consumer Sciences Extension (Mindy McCulley). The webinar was open to the public, with 36 county Extension offices promoting in-person watch parties. Of those, 23 counties received a large enough response to host local county-level events at their Extension office or at a community location, representing 1 in 5 counties tuned in live. The webinar was widely promoted by local county offices, state-level Extension media, partnering organizations and Extension stakeholders, and across the broader university system.
Results:
In total, 1,270 people registered for the event. Approximately 197 people participated at in-person watch parties and 434 people logged onto Zoom on their own to participate. Together, 631 people participated in the live event, not including Extension field staff in attendance at county-level events.
At the conclusion of the webinar, 64% of attendees (n = 407) completed a post-event evaluation. Respondents represented 88 of Kentucky’s 120 counties. Notably, 52 participants did not disclose their home county, which may be attributed to several attendees indicating via the webinar chat that they were joining from other U.S. states. The average age of respondents was 56 years, with ages ranging from 18 to 87. In terms of race and gender, 90% (n=366) self-identified as White, and 72% identified as female. When asked whether they or someone in their household had been diagnosed with alpha-gal syndrome, 46% (n=189) responded affirmatively.
Of those surveyed (n=407), 98% (n=395) indicated they could describe alpha-gal syndrome and the common cause, and 98% (n=400) stated they had a better understanding of which foods, ingredients, and products may trigger symptoms. Additionally, 98% (n=399) reported they could identify ways to prevent tick bites, while 97% (n=397) were more aware of strategies to manage daily life with alpha-gal syndrome. Further, 96% (n=392) acknowledged they plan to use an identified method for tick bite prevention in the future. Regarding program satisfaction, many participants agreed or strongly agreed that the program was educational (73%; n=296), practical (72%, n=294), and that they would like to receive additional programming related to the topic (63%, n=258).
Feedback was very positive from participants. Some participants shared:
- “I run a large alpha-gal information website. This is the best webinar on AGS that I have ever seen. Well done!”
- “I loved this webinar. It was so convenient and I felt like I was with friends who understood my alpha gal challenges and cared and wanted to help.”
- “I work for the state health department and this is beneficial knowledge to have! Thank you to all the presenters!”
- “Thank you!! It was good to know others are dealing with this too. This gave us more info to talk with our doctors too.”
- “I definitely plan to share this information with others.”
- “Thank you SOOOO MUCH for offering this and promoting it widely. I’ve never known about Extension programs at all prior to this, but I’m definitely gonna start following your programming.”
The live webinar was recorded and posted to YouTube immediately following the event. Three weeks after the event, the recording has been watched by 322 people. In response to the high demand for alpha gal-related programming, UK Extension plans to increase agent capacity related to tick identification, alpha-gal frequently asked questions, and create new lessons and materials that can be used at the county level by all programming areas.
Public Value Statement:
Kentucky has one of the highest rates of alpha-gal syndrome (AGS) in the U.S., yet few evidence-based resources exist to help those affected. We recognize that high incidence of AGS diagnoses could have far-reaching implication on beef, pork, and venison consumption patterns. In a state with the largest beef herds east of the Mississippi river, it is critical that educational programming provides prevention measures for consumers and all producers while working animals outdoors. We also much recognize the physical, social, and economic implications that this condition exerts on those diagnosed and the producer community. In response, the University of Kentucky Cooperative Extension Service launched a statewide initiative, including a public webinar, to provide reliable information on AGS symptoms, management, and prevention.
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