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Anyone diagnosed with alpha-Gal syndrome?
Autoimmune Diseases | Last Active: Jan 14 12:44pm | Replies (20)Comment receiving replies
I have had Alpha Gal Syndrome for eight years. I now have a torn rotator cuff and torn bicep that really needs surgery. However, most hospitals use heparin and other "pork or beef" related drugs during surgeries and I not only have Alpha Gal but also have, "Pork Cat Syndrome" which will make my throat close almost instantly if consumed. So I am terrified of surgery. In Maryland, most hospitals haven't a clue what I am talking about, including all of my physicians from cardiologists down to primary care. I am 78 years old and very active, still teach at the college, bowl, walk, etc., but now my right arm which is my dominant side, is in constant pain and I am too frightened to have a shoulder cuff "replacement." Any comments negative or positive?
Replies to "I have had Alpha Gal Syndrome for eight years. I now have a torn rotator cuff..."
@donnamac Hello, I have had alpha gal for 15 years. I had hip replacement surgery in May 2025 at Maine Medical Center in Portland, Maine. My surgeon and staff (anesthesiologist and pharmacy) researched for 4 months on what medications and anesthesia would be safe for them to use for my surgery. They did a spreadsheet and are submitting it for a peer review paper to help other patients like you so other surgeons know what to use. Perhaps your surgical staff could contact the pharmacy at Maine Medical Center to see what they used. I totally understand your fear but my surgery went extremely well; I woke up in the recovery room after 90 minutes and wasn't groggy or in pain and went home the next day. I am 75 and completely recovered; I was in a lot of pain like you with arthritis and bone spurs. If you could find a surgical group who could do this kind of research to assure you that they know what to use that will be safe for you. For example, propofol, an anesthesia, can be made with and without animal proteins. They need to research and find those types of meds for you. There is a dr. in Virginia, Dr. Thomas Platts-Mills, UVA-Charlottesville, who has done tons of research on Alpha gal and a place to go for information. Good luck! I hope this helps you 😀
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@donnamac I was officially diagnosed with Alpha Gal in September of this year. I've been struggling with the inability to eat meat since 2020. My symptoms have been gastrointestinal only, cramps, bloating, gas, and diarrhea. It typically takes 7 to 10 days to run its course. However what I wanted to share was I had reverse shoulder replacement of my right shoulder in May 2025. I personally had no side effects of any medications. Since I didn't know I had Alpha Gal it was not part of the conversation with my doctor. I am a active 70 year old male.