Just days before Christmas 2021, Nicole Cooper was struggling to breathe. Her husband called 911, and moments before the ambulance arrived, Cooper jabbed herself with an epinephrine shot. She could tell she was having an allergic reaction, but she didn’t know what she was reacting to.
She remembers the panic, the medical questions and treatments in the emergency room. What she doesn’t remember is the tick bite that triggered it all.
Cooper had always been meticulous about using insect repellent and checking for ticks after spending time outdoors, she said. It had been at least a decade since the last time she remembered finding one attached to her skin.
She lives in Roanoke, and she’s long loved the outdoors and learned to always be careful to protect against ticks and other insects. She had been bitten by a tick, but never actually saw the perpetrator.
The bite left her with alpha-gal syndrome, a condition that makes the body allergic to red meat and other products derived from mammals. It’s commonly called the red meat allergy, but for Cooper, the reference doesn’t come close to capturing the life-altering impact of the diagnosis.
“I cringe to call it that because it’s reductive in such a way that you cannot fully comprehend how overwhelming this diagnosis is,” Cooper said.
A bill that passed unanimously during the 2024 General Assembly session authorizes the state Board of Health to adopt regulatory changes on July 1 to add alpha-gal syndrome to Virginia’s list of reportable diseases. The amendments still require review by the offices of the attorney general and the governor; once approved and published, the regulations will take effect in 30 days.
Mandatory reporting is expected to begin before the end of the year, although the exact start date is unknown.
In Virginia, health officials don’t know how many people have the condition because the state hasn’t tracked it, said Cali Anderson, senior epidemiologist for the Central Virginia Health District. With more data, she hopes there will be a better understanding of the syndrome.
“We will now be able to track what’s occurring with alpha-gal. Up until this time, we haven’t really had a reliable method of tracking other than anecdotal reports,” Anderson said.
As the law’s implementation neared, Anderson’s team began pulling together what fragmented data they had. It showed Appomattox County with the highest rate of reported alpha-gal cases, followed by Amherst County.
The Central Virginia Health District, which serves Lynchburg and the counties of Amherst, Appomattox, Bedford and Campbell, has seen steady growth in cases. Bedford County, in particular, has been identified as a hotspot in the past.
“Overall, it’s increasing,” Anderson said.
The allergy develops when a sugar molecule, often transmitted by the Lone Star tick, is introduced to the bloodstream. This molecule is common in non-primate mammals but foreign to humans. The immune system reacts by attacking the molecule and, in doing so, causes allergic reactions that range from hives to gastrointestinal upset to life-threatening anaphylaxis.
Once sensitized, the body treats every reintroduction of that molecule as a threat. It may take several weeks or months before the body develops a reaction to alpha-gal, making it difficult to diagnose.
The allergy was first discovered in 2008 by a doctor and researcher at the University of Virginia, Dr. Thomas Platts-Mills. It took many more years of research to prove the connection between ticks and alpha-gal syndrome. It wasn’t until 2023 that a case-control study with the Centers of Disease Control and Prevention proved the association with bites from the Lone Star tick, though the tick had been a suspected carrier for many years.
Because alpha-gal is still an emerging public health concern, many doctors and nurses have limited knowledge or experience in helping patients with it. A 2023 report from the CDC found that nearly half of 1,500 surveyed primary care providers, including doctors, nurse practitioners and physician assistants, hadn’t heard of alpha-gal syndrome. About a third said they were not very confident in diagnosing or managing the condition, and only 5% reported feeling very confident in doing so.
A daunting diagnosis both emotionally and financially
For Cooper, the new reporting requirement marks an important shift not just for data collection, but for public awareness and medical legitimacy.
When she was first diagnosed, she searched the Virginia Department of Health website for more information and found nothing. She turned to public health sites in Arkansas and Missouri, where awareness was slightly better but still limited.
“The fact that this is now going to be a reportable disease means more providers will be informed, they’ll have to be informed, hopefully. But also we can get a better understanding of how this condition is progressing and bring more attention to it so that we can find treatment options,” Cooper said.
At the time of her diagnosis, Cooper was told to avoid red meat, primarily beef, pork, lamb and wild game. But she soon realized that managing the condition was far more complex.
Her reactions weren’t limited to just eating food. She couldn’t be in the same room where meat was cooking without coughing and wheezing. She broke out in hives almost daily until she discovered that the culprit was her wool dryer balls, which were made with lanolin, a substance derived from the sebaceous glands of sheep.
Animal byproducts are everywhere: in lotions, tissues, lip balms, cleaning products, sanitary supplies and even bottled water. Aquafina, for example, is filtered through bone char and leaves behind enough material to trigger a reaction for some people with alpha-gal.
“It is daunting emotionally as well as financially,” Cooper said. “If you’re social or you like to go out to eat, especially at the beginning, it’s almost a nonstarter because you just cannot guarantee [avoidance of animal products].”
Medications posed an even greater challenge. Many over-the-counter and prescription drugs contain animal-derived ingredients. Gel capsules, in particular, are often made from gelatin derived from animal collagen. And drug manufacturers aren’t always transparent. Cooper has had to call companies directly to find out what’s in her prescriptions, something even pharmacists often can’t confirm.
To cope, Cooper started a Facebook support group for people in the Roanoke area living with alpha-gal. The group has nearly 350 members who share articles, product warnings and crowd-sourced information about safe medications.
Regular people are filling in the gaps left by a lack of research
Heather O’Bryan, who also lives in the Roanoke area, was diagnosed in 2019. Early on, she found that online groups like these were essential to navigating her diagnosis. She was listed as a support contact in Roanoke for Alpha-Gal Information, an online resource created by patients for patients. It includes a disclaimer: The people behind it aren’t doctors. They’re just trying to fill in the gaps left by the medical establishment.
O’Bryan hears from newly diagnosed people nearly every week.
“I get so many newbies all the time. They’re going through shock, they’re mourning, they don’t know what to eat. They don’t know what’s safe,” O’Bryan said.
Some are so scared they stop eating altogether. One person contacted O’Bryan after eating only applesauce for days because it was the only food they were sure wouldn’t cause a reaction.
Her first step is always practical. She gives them a list of groceries to buy. Chicken is generally safe, but she recommends organic, free-range poultry because even what the animals are fed can affect alpha-gal patients.
The early stages of alpha-gal syndrome are often the most difficult. During this time, inflammation peaks and the immune system becomes hypersensitive, making even minor exposures feel overwhelming, O’Bryan said.
Many people cut out all dairy products in addition to red meat, at least initially. But after several months without a reaction and years without another tick bite, some individuals can go into remission.
That’s been true for Cooper. She’s avoided any additional tick bites, and her symptoms have eased significantly. She cautiously reintroduced dairy and other animal products slowly.
O’Bryan has also seen improvement in her reactions since she was diagnosed six years ago, but avoiding ticks is almost impossible for her. She’s a horticulturist and works in garden centers throughout Roanoke. She’s outdoors almost every day. This year, she’s already spotted four ticks embedded in her skin.
An agitated tick will regurgitate into the wound. That’s why proper removal is important.
While alpha-gal cases are rising in some areas, other tick-borne diseases, like Lyme disease, actually declined last year, at least in the Roanoke City and Alleghany Health Districts, said Christie Wills, the districts’ public information officer.
But those numbers likely don’t tell the full story. Tick-borne illnesses are often underreported because they’re hard to diagnose. Both Lyme and alpha-gal syndrome can bring delayed symptoms that don’t appear until weeks after a tick bite.
Lyme disease is a bacterial infection transmitted through the bite of a blacklegged tick, also known as a deer tick. The first telltale sign is often a bullseye-shaped rash around the bite. Other symptoms that emerge later include headaches, joint stiffness, swollen lymph nodes and muscle aches and pains.
If diagnosed early, Lyme disease is typically treated with antibiotics. Removing a tick within 24 to 36 hours can greatly reduce the risk of contracting a disease.
“It’s ticks that have been attached longer we’re more worried about. That’s not a hard and fast rule, just a generality,” Wills said.
Proper removal also matters. Wills advises using tweezers to grasp the tick as close to the skin as possible, then pulling it straight out. Twisting or jerking can cause parts of the tick to break off and remain in the skin.
She warned against common myths like burning or smothering the tick. Those methods agitate the tick and can increase the risk of infection by causing it to regurgitate into the wound.
Once the tick is removed, Wills recommended sticking the tick to a piece of paper with clear tape and keeping it on hand for a few weeks. If symptoms develop later, identifying the tick can help health care providers diagnose Lyme disease, alpha-gal syndrome or other tick-borne diseases.
Public health officials encourage people to take tick prevention seriously. Insect repellents containing DEET are safe and effective when used as directed. Treating clothing with permethrin, a pesticide that repels or kills ticks and other insects, adds another layer of protection.
Simple, low-tech strategies also help. Wills suggested tucking pant legs into socks, showering immediately after coming inside and tumbling clothes in the dryer for about 15 minutes.
Overall, Wills said public awareness about ticks and the health risks they pose has grown in recent years. That increased vigilance is crucial, especially as climate patterns shift. Warmer winters and milder temperatures are extending tick season, allowing ticks to remain active for longer periods and expand into new areas. As a result, the window of exposure is growing, making prevention and education more important than ever.
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Correction 5 p.m. June 20: Mandatory reporting of alpha-gal syndrome in Virginia is expected to begin before the end of the year, although the exact start date is unknown. An earlier version of this story included incorrect information about the mandatory reporting date.