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Alpha Gal: 'I'm just kind of – I'm waiting for it to come back, and it's scary.'

Provided by Wendy Rich

Wendy Rich is from Joplin, Missouri, and was diagnosed four years ago with alpha gal – a tickborne illness that causes allergic reactions to red meat and other products made from mammals. It is transmitted though the bite of a Lone Star tick.

Since then, Rich co-founded the Joplin Alpha Gal Awareness group to support others who have been diagnosed with or are looking to learn more about the illness.

She spoke about some of the ways the disease has impacted her day-to-day life, and as a note, Wendy’s dog was very talkative the day the interview was recorded.

Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words.

Wendy Rich: I was waking up in the morning and my lips were huge. It looked like I had had a double Botox injection or something. I mean, they were humongous.

And this went on for – I don't know – probably about four or five nights. I’d, you know, go to bed, I'd be fine. I'd be huge.

So, I went to my doctor, she didn't know what was going on, so she referred me to an ENT [Ear, Nose and Throat specialist], and they tested me, and they said that I had alpha gal.

And I just – I didn't get better. I was sick. I was breaking out in hives and everything every day. So, I kind of isolated myself with things at home and found different things I could prepare on my own.

"And now, I still am not as outgoing as I was – even though it's in remission. I've just kind of, I'm waiting for it to come back unfortunately."
Wendy Rich

I did work with a couple of restaurants in town on alpha gal and what we could have, what we couldn't have – because I was having reactions to people's deodorant, anything that they wore that had like a scent, or had mammal in it – body washes, perfumes, air fresheners, cleaning products, everything just seemed to set me off.

Before I was diagnosed with alpha gal, I was very outgoing. I was involved in everything – volunteering, very active. I noticed when I was having the reactions and stuff, I withdrew from pretty much everyone and everything.

I went to work, and I came home. I didn't go to church. I didn't do my usual stuff. When we had isolate [for COVID-19], it really wasn't a big deal for me. It was, you know, actually I had more freedom than I had before COVID.

And now, I still am not as outgoing as I was – even though it's in remission. I've just kind of, I'm waiting for it to come back unfortunately. I just know something's gonna set it off at any time. I've had a few reactions here and there, and it's scary.

And I don't know if it's the alpha gal that's slowly coming back out or I don't know…

People filed complaints against me at work because they thought I was faking. They invoked a “scent free” policy at my office, and it really upset some people.

They really thought that I was faking. I don't know how I could have made the hives come out, you know, fake that? But people don't want to believe it.

But I think no matter where you're at – you can adapt. You can find things that will fit in the diet. You have to get a little creative sometimes…

Rachel Schnelle is a senior journalism student studying Radio Convergence Reporting. She is an anchor and reporter for KBIA. She can be reached at rescm4@umsystem.edu