Alpha-gal Patient Perspectives

David (Patient) Meets Goliath (Health Provider)

To gain a rapid assessment of the top concerns of patients with Alpha-gal Syndrome (AGS), Tick-borne Conditions United (TBCU) conducted a survey in early August 2019. This survey was sent via e-mail to newsletter subscribers and posted on social media accounts. Due to the need for a quick turnaround, the survey was posted for 48 hours. One hundred thirty-one (131) people responded.

The top three concerns of AGS patients center on lack of knowledge of healthcare providers, ingredient labeling, and the need for research funding. Here is a quick summary of findings.

89% Lack of healthcare provider knowledge

79% Ingredient labeling on food and pharmaceuticals

36% Funding for additional research on Alpha-gal

35% Other

21% Lack of non-mammal ingredient vaccinations

21% Broader tick testing to capture additional conditions

15% Need for treatment, prevention, and signage in public places

8% Coping in the workplace and school environment

5% Mammal-free tick repellents and yard treatments

5% Lack of understanding and support from family and friends

To view additional study details, please click here.

Share Your Alpha-gal Experiences. Take the Survey!

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