A rare tick-borne disease, known as alpha-gal syndrome, impacts up to 450,000 people in the USA Now cases are being reported in the UK, but the number here is much lower Betty Newman tells KasiaLDelgado about her experience of living with alpha-gal
I try to remember I’m lucky, though. There are people who have alpha-gal even worse, they can’t even be near a soap made from gelatin. But I have it pretty badly and a more extreme version than a lot of people I’ve since talked to.
A lot of people with alpha-gal just have to avoid ingesting meat for some months or years, and then improve. Someone I know can even eat a small steak now, after three years of avoiding meat. There is definitely some hope in all this. It is possible, I’ve been told, that if I am able to avoid anything mammalian for long enough, I will get better, but there’s so little research that there’s no way of knowing this. The hardest part has been dealing with the medical field – very few doctors seem to know anything about it.
When I was diagnosed, I wasn’t given help with diet, or given much support. I felt alone. I’ve had more sympathy and advice from my gastrointestinal doctor than anyone else. The main fear I face now is being bitten by another tick, because that can make the allergies more intense. I am much more controlling than I used to be, and I hate having to say no and miss things.
I’m sad for my old life. I have even fantasised about moving somewhere primarily vegetarian but I’m not going to leave my family here and head to a faraway place I’ve never been. You can see why I might consider it, though, when I’m struggling. For now, I live as best as I can and hope the more awareness there is, the more people like me will get help and support.
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