It has been almost one year since Al Jazeera told the stories of three Americans living with a bizarre, life-changing food allergy — one believed to have its origins in a tick bite.
The three are among a growing number of people who have been bitten by the lone star tick, a small arachnid named both for the single, white spot on the back of the female, and for the state that used to be its main habitat: Texas. Now, however, because of changes in the environment and climate, the tick can be found in most states east of the Rockies.
When I spoke to them last year, Chris Richey, Austin Lemieux, and Jeff Conley were all still adjusting to life with an allergy to alpha-gal, a type of sugar found in mammal meat and other products like milk, gelatin, and even artificial flavorings made from castoreum (which is found in the anal glands of the North American Beaver, often listed as a “food additive” on labels).
I recently got back in touch with those three to see what had changed in their lives — and what had not.
“I’m a year smarter on everything,” Conley said from Maryland. “There are times in certain restaurants that I feel myself getting sick. It really starts with my head, and I would just remove myself from that situation.”
Those with the allergy react depending on their sensitivity: from indigestion to anaphylaxis. Conley’s recent reactions have not been as bad as the first time he experienced the allergy, when his dinner brought him to death’s door. Most times he can take antihistamines and avoid the doctor altogether.
Richey has not been so lucky. When we spoke last year in Missouri, she described every meal as Russian roulette. She was so sensitive that even the slightest cross-contamination of food could give her a reaction.
“I hate this with a passion,” she said. “I can’t tell you how much I hate this. There’s no words. My life has been taken over. I’m an old lady now. I should be going out to lunch with my friends, kicking back, going out to dinner ... I can’t do that. It’s terrible.”
Over time, it seems that her condition has only gotten worse. Richey now lives in Florida after her husband passed away earlier this year, and is working at a dry cleaner’s next to a restaurant. It didn’t take long for her to notice burning hives on her skin when the restaurant’s fumes drifted into the shop.
“My lips went numb and tingly, and I started having trouble breathing,” she said.
High school student Lemieux of Bee Springs, Kentucky, has also continued to have reactions. His mother, Shauna Hensley Gravil, said in an email that this fall, Lemieux, who plays football for his high school, had a reaction in the middle of a game and spent an entire quarter in an ambulance.
Despite a burst of media attention surrounding the alpha-gal allergy earlier this year, those like Richey, Lemieux, and Conley who continue to live with the condition are still waiting for a cure — or at least something to ease their suffering — while trying to navigate through a condition that turns every meal into a health threat.
And living with this allergy is about much more than simply giving up cheeseburgers.
One story from Richey stands out. Back in Missouri, in her early days of living with this allergy, she had lunch at a vegan restaurant whose owner assured her there was no cross-contamination with animal products (pretty much the very definition of vegan). Yet, Richey had a reaction. Something at the vegan restaurant had, somewhere, come in contact with a mammal product.
Ironically, Richey has also had to eliminate certain allergy medications because they, too, contain alpha-gal. In other words, she is allergic to allergy medicine, itself.
Because of the pervasive and still relatively mysterious nature of the affliction, those living with the allergy have formed support groups online to exchange experiences, advice and recipes. One Facebook group, where we first found Richey, Lemieux and Conley, has grown to more than 700 members in at least a dozen different countries.
All the rage in the group right now: emu meat.
“I’ve thought about it,” Jeff Conley said with a laugh. “But I haven’t ordered any yet. I hear it tastes pretty similar to beef.”