Meet Cortney McCord, a passionate advocate and warrior navigating the challenges of Alpha-gal Syndrome (AGS). Diagnosed in 2021, Cortney has faced the hurdles of delayed diagnosis, managing symptoms, and reshaping her daily life to avoid triggering reactions. Determined to make a difference, she’s become a driving force in the AGS community—leading Facebook groups, sharing vital information, and championing legislative change to support others living with AGS.
Can you tell us a little bit about yourself?
I am a registered nurse. I volunteer my time as a nurse educator in the Facebook support groups that I started. I am currently a full time college student pursuing my masters degree in dietetics and nutrition with the goal of becoming a registered dietitian.
When were you diagnosed with AGS? Did you know about it previously?
My first anaphylaxis happened in July 2021. My very first reaction happened when I fried pork sausage for my family for breakfast. I had anaphylaxis from inhaling the airborne alpha-gal from the sausage. I did not know a lot about alpha gal at that time, but I was aware of it thanks to contracting Lyme and other tickborne diseases in May 2021. I was really sick at the beginning. I was not believed by the first allergist I saw. He thought it was impossible to react simply to airborne alpha-gal without eating the meat. It took me 8 months to receive adequate care from an allergist. I had to travel to see Dr. Scott Commins, who is the world’s leading researcher for AGS. His excellent care is why I am alive and kicking today!
How have you gotten involved in the AGS community?
As time passed and I learned more about AGS, I started helping others in the (Facebook) support groups by commenting on others' posts. Then, I saw a need to create my first group–Alpha-gal on a Dime. Then, after some time and with some encouragement from other AGS advocates, I started a group for airborne patients like me– Airborne Alpha-gal (aka fume) Reaction Support Group. Then I started groups for art (Alpha-gal Artists), meal planning (Alpha-gal Meal Planning Hub), Xolair (Alpha-gal and Xolair (omalizumab) Discussion Group), and a local group called Alpha-gal Allies of Northeast Mississippi.
What has been your biggest challenge navigating an AGS diagnosis?
The biggest challenge for me in navigating my AGS diagnosis has been the lack of education amongst medical professionals. There is a need for more peer reviewed medical literature that teaches practitioners in every specialty how to care for AGS patients. I hope to change that soon for the field of dietetics and nutrition.
What motivates you to do the work you do?
I started this work when I was so sensitive to airborne alpha-gal that I’d go into anaphylaxis any time I left home. I was having to use epi pens so often that it wasn’t funny. I was so scared I would die from this. My entire family was scared too. I decided that if alpha-gal was going to be the defining feature of my life, that I would make it positive by helping others. I wanted to leave a legacy of service as an example for my family. I say all of this to encourage folks to get involved as they’re able and to help them know that there is hope and treatment even for someone who has been as sensitive as I have been in the past.
What advice would you give to those newly diagnosed with AGS?
I would encourage everyone to do what they can to help others. It is a joy. You don’t need any special skills to listen and encourage others. Another easy way to get involved is to reach out to your Federal Representatives. Ask them to cosponsor HR 9382– the Alpha-gal Allergen Inclusion Act. This legislation will declare alpha-gal the tenth major food allergen. If passed, food labeling will become mandatory. All I had to do was ask my Congressman’s health aide if he would co-sponsor the bill and he did! It only took a phone call and an email. I’d encourage everyone to do this for themselves and our community.
Another tip I would have for those who are new to AGS is to start with this Checklist for the Newly Diagnosed from alphagalinformation.org. It includes information on how to recognize and treat anaphylaxis, which is so important.
How has VeganMed impacted your experience with AGS?
I really needed a service like VeganMed from the very beginning. My first FB post in an alpha-gal group was asking if the rescue meds in the ER would be safe for me. I had been taking Armour Thyroid, which is made from pork thyroid glands. It sent me into the worst anaphylaxis I’ve ever had. It was terrifying knowing that a medication made me this ill and not knowing if the medications I’d be given would help me or harm me further. Thank you for your hard work!
What are some changes you would like to see within the VeganMed team?
I would like to see federal funding to support the database that VeganMed maintains. I wish every doctor and pharmacist in the nation had instant access to it.
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I am SO proud of you and what you are doing! I can't wait to hug your neck!
Cortney, thank you sharing your journey. I was diagnosed with AGS in 2015 and know how serious a reaction can be from fumes, ingestion, injection, contact, cross contamination and use of medical, pharmaceutical and personal care products. I understand the frustration when working with medical and dental professionals that are unaware of AG. VEGANMED has been incredibly helpful by reviewing pharmaceuticals and dietary supplements (e.g. vitamins) prior to receiving a medical or dental procedures or filling a prescription. I will support bill HR 9382 with my representatives to stress the importance of this allergen warning be on all sources that we are exposed to.