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Living with Alpha-Gal Syndrome: Hopeful Perspectives from a Patient


This narrative is a firsthand account shared by an individual living with Alpha-gal Syndrome (AGS).


Hello, my name is Emily and I have been living with Alpha-Gal Syndrome since July 2022. I live in a rural community located in Southeast Kentucky.

Emily

It was a very scary and difficult time in the beginning. I almost lost my life several times with trips to the emergency room (ER) within a week, not knowing at the time that Alpha-Gal was the culprit of my issues. An initial unknown reaction was at the ER after being given IV antibiotics that contained mammal-derived ingredients. Within minutes my blood pressure and heart rate spiked then suddenly dropped, and my fingers were blue. Almost in a seizure state and on the verge of unconsciousness. The next incident with the ER occurred a week later which led to massive hives that eventually covered my body from head to toe, hypertension and hypotension, bradycardia, and chest pain. Lastly, an incident being transported by EMS to the hospital. Symptoms were difficulty breathing, bradycardia, face/lips swollen, which led to full blown anaphylaxis, and the paramedics administered IV epinephrine on the spot.


A week later, I received the call that would change my life. I was positive for Alpha-Gal, which resulted from a tick bite from the Lone Star tick. This is a life-threatening allergy from red meats. But let me say, it is so much more than that. Some people can react to anything that contains animal derived ingredients. When diagnosed, I didn’t realize how much impact this would have on my daily life. I am a registered nurse, and until that point I had never heard of such a thing. Other tick-borne illnesses, yes, but not this. I quickly found out that no medical professional I dealt with really had any experience with this, and many were not even aware of it! I felt overwhelmed, alone, scared, and defeated. So, from that point, I dedicated myself to educating myself with as much information as possible. Now, during this time I dropped weight quickly and cried a lot. I was scared to eat anything thinking “what if it caused a reaction?” As I am sure most can relate who lived with AGS, it was not an easy start. Your body is full of inflammation inside and out and needs time to heal. Medications, plenty of water, and omitting all mammal products/by products is a healthy start.


The hurdles that I have faced with AGS are ongoing. For me, I have to read and research everything that is going into my body and coming into contact with it. All foods, personal hygiene and skincare products. This includes hairspray, toothpaste, toilet paper, make-up, etc. I am fume reactive as well. So, it presents a more complex challenge. As my reaction symptoms include dropping rapid heart rate or the opposite, dizziness, headache, nausea, and difficulty breathing. I have to think about my surroundings consistently. Going outside, making sure you check for ticks, stay away from leaves, apply tick spray, etc. People’s perfume, strong laundry detergent, candles, meat cooking, cigarette smoke, air fresheners., as these can cause anaphylaxis. The list goes on. It is exhausting. Your mind and body are never fully at rest. Let me say this, this affects everyone in your life, especially if you have a partner. This becomes stressful for them as well. Even though we are living it and it is our bodies, they live with us. It gets tiresome. It can bring you closer or push you further apart.


As far as my diet goes, changes had to be made. I now eat whole, fresh foods. This means, I cook all my meals and eat fresh fruits/vegetables. I have issues with dairy (some people do not). No eating out. With so much cross contamination, cooking practices, and unsafe ingredients, it is not safe. My husband and I cannot just go out for a date night dinner or stop by any restaurant for food while running errands. Packed snacks/drinks are a go-to. For me, eating a low histamine/low caffeine diet consists of fresh chicken, sweet potatoes, salads, organic brown rice pastas, oatmeal, ostrich, duck, emu meats, organic shakes, and vegetables are my go to. Homemade pizza, biscuits and gravy, and homemade desserts are a plus. Anything with fins and feathers are safe to consume.


My biggest defeat in the beginning was trying to find safe alternatives to my daily prescribed medications. This was an absolute nightmare. I had no help from healthcare providers, allergists (several), or pharmacists. They were not familiar with such a thing and offered no guidance. And the ones that stated they were, in reality, still had no clue the depth that this fell into. Eventually I found a compounding pharmacy to safely make my medications, but these are not covered by insurance and can get costly. I recently inquired on VeganMed about my medications and the team was successful in researching and relating information back to me. They had not only found safe options, but also forwarded me the name of medication, NDC numbers, as well as the manufacturer. For once, as far as professional assistance was concerned, I did not feel alone in this ongoing stressful journey. It is very difficult to navigate typical over the counter medications as well. A lot contain gelatin, dairy, lactose, and other animal derived ingredients.


Living with AGS presents its challenges. Expenses to accommodate this allergy can get costly. Food costs twice as much, since it is primarily clean, whole foods. Complete changes in all products at the beginning add up. Every single person is different with this. Reactions and severity vary from one to the other. You can go places and do things, but it requires research and planning, whereas before I would not have given that a second thought. It has most certainly taken away some freedom. Today, I am in a much better place mentally and physically than a year ago, and I am thankful for that.

My hope is that in the future, there is a cure for Alpha-gal. At this time, there is not one. Yes, you can take daily antihistamines to help with issues and there are Xolair injections for people who suffer with fume reactions, as well as an acupuncture treatment called SAAT. Everyone reacts differently to all of these. It is said that this may at some point go into remission, but if bitten again, will come back worse. More education is a must!! I fear that until the CDC requires mandatory reporting for positive cases in every state, this will not happen anytime soon.


For anyone that is coping with this or knows someone, I would advise please do your own research on products and safety. Carry your rescue meds, get a medical alert bracelet/card, and seek support, because this can break you down quickly. Be cautious and always be prepared. This is a life-threatening allergy and should be taken seriously. But still enjoy life to the best of your ability!


Conclusion


We extend our gratitude to Emily for sharing her experience of living with Alpha-Gal Syndrome. Her candid account serves as a beacon of inspiration for those facing similar challenges, offering insights into the complexities of daily life, and the strength required to navigate this unique journey. We hope your story will foster empathy and a sense of community to others learning to manage this allergy.


Emily’s story is just one of the 1,300+ inquiries we’ve resolved this year. Our team at VeganMed understands how complicated alpha-gal can be and appreciate the support from our patients. We are always happy to help you find animal-free products! Please contact our medical information team with your questions!


Happy Holidays and a Happy New Year from the VeganMed Team!

 

Disclaimer: The product and/or information provided on VeganMed is of a general nature and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not lab test the products to confirm that they are free from animal ingredients, and it is possible that the formulation and ingredients could have changed. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition or product. The information provided in this post is accurate and up to date as of the date it was written. However, please note that circumstances and facts may change over time, and new information may become available that could alter the accuracy or relevance of the content. We encourage readers to verify and cross-reference any information provided here with trusted sources or consult relevant professionals for the most current and accurate updates.


 

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