Alpha-gal syndrome (AGS) is becoming more common, affecting over 450,000 people in the US. It's an allergy triggered by a sugar molecule called α-gal, found in most mammals which can be transmitted from the Lone Star Tick. This allergy is often ignored and makes taking medications tricky because 75% of them have ingredients from animals. What's worse, 75% of AGS patients react to these ingredients, with 50% having severe reactions.
A study presented at the American College of Cardiology 73rd Annual Scientific Session & Expo looked at discussions in social media groups for AGS patients about medication. The goal was to understand how hard it is for these patients to deal with medication.
Unraveling the Medication Conundrum
Patients with AGS are not only vigilant about their dietary choices but also meticulously scrutinize their medication intake. The study revealed that discussions about medications (20%) in AGS social media groups were nearly as prevalent as those about food (22%). Given the prevalence of animal-derived ingredients in medications, transparent labeling is crucial for patients managing AGS.
Insights from the Study
Researchers looked at posts from three AGS support groups on Facebook, which represented 5% of all members. They analyzed 1,195 posts and sorted them into different categories like treatments, symptoms, and medications.
The frequency of drugs mentioned within these groups revealed some noteworthy findings. Diphenhydramine, cetirizine, fexofenadine, and ibuprofen were among the most discussed medications, highlighting the significance of antihistamines and pain relievers in managing AGS-related symptoms. However, what's concerning is the presence of animal-derived ingredients in some of these medications, potentially posing risks to AGS patients.
A Call for Transparent Labeling
The study underscores the high patient burden associated with identifying safe medications for AGS management. Transparent medication labeling, such as indicating certified animal-free products, could significantly alleviate this burden and enhance patient safety.
Conclusion
The study sheds light on medication discussions in AGS social media groups, stressing the need for clear labeling and healthcare provider awareness. Collaboration among academia, healthcare, and advocacy groups like VeganMed, Inc., can address medication challenges. By raising awareness and advocating for transparent labeling, we empower patients and enhance their quality of life.
See the study poster below:
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