One Woman’s Fight To Raise Awareness Around A ‘Silent Killer’ Disease
By Tatiana Ryckman
I meet Candace Stark at a bar off of highway 71 in La Grange, Texas. As we sit down, she notes with excitement, “It’s international Chagas day.” This is indeed a remarkable coincidence, since Stark is one of 23 people known to have been infected with Chagas while in the United States.
Chagas is a parasitic illness that affects an estimated 6 to 7 million people worldwide, according to the World Health Organization, attributing to 12,000 deaths annually. Long considered a tropical disease, since it is primarily found in Latin America, Chagas also has a presence in the United States — especially south Texas, where Stark lives. The parasite that causes the disease, Trypanosoma cruzi, is transmitted most commonly by insects known as kissing bugs, and perhaps unfortunately, initial symptoms of infection tend to be mild. The kissing bug bite that causes Chagas may itch like a mosquito bite, and unless you go into anaphylactic shock (and some do), you’re not likely to go to the hospital to get tested. Early in the infection period, one may experience flu-like symptoms, which pass in a few weeks.
After the acute phase, the host enters the chronic indeterminate phase, in which it may appear nothing is happening to the patient, and for most people, there are no further issues. But for 20 to 40% of patients, the cases progress, over years or decades, into the chronic determinate phase, usually characterized by heart disease, sometimes resulting in cardiac arrest and death. But it often goes undiagnosed — heart disease is difficult to link to a bug bite 40 years after the fact.
That there have only been 23 reported human cases of Chagas in the United States since 1955, however, speaks to the lack of awareness rather than lack of infection, according to researchers. The U.S. Centers for Disease Control and Prevention estimates that there as many as 300,000 infected individuals living in the United States. “When you’ve only got 23 people who are infected here in the United States, [everyone says] it’s not an epidemic, it’s nothing to worry about,” says Stark, suggesting a sort of vicious cycle. “Because there’s only been 23 people — ‘only.’ That’s what they say.”
I only began contacting researchers about Chagas disease because my grandfather Raymond Edward Ryckman, a medical entomologist who dedicated his career to studying T. cruzi, told me it was endemic in my new home state of Texas. (For whatever it’s worth, I received a shockingly enthusiastic personal response when I called researchers and mentioned his name, suggesting that his contribution to the study of kissing bugs and Chagas disease was not just family lore, and as I was working on final edits for this piece he passed away in his sleep, in own his home, at 99 years old.)
Stark found out she had Chagas after she went to give blood. And since she had never heard of the disease, for two terrifying days, between getting a surprising letter with her diagnosis and being able to see an expert about it, she was left with only the internet as a guide.
“You look on the internet and it comes up as ‘The next HIV.’ Well that just sounds terrible . . . The explanation when they say this is that it’s [also] a ‘silent killer,’ because you didn’t know you had it. And I said, well that’s not what people think when they look at [it being compared to HIV]!”
Because there aren’t many patients, there are few knowledgeable American doctors prepared to respond to and treat a positive diagnosis. But Texas is taking its Chagas cases seriously, and many of the current experts on the topic are in the state. This is also thanks, in part, to a large grant the CDC awarded Dr. Paula Stigler-Granados, an assistant professor at the University of Texas Health Science Center at the School of Public Health’s campus in San Antonio, for the explicit purpose of increasing public awareness of the disease.
Yet despite these efforts, knowledge is still limited. When Stark first met her new doctor in College Station, roughly three years ago, she asked, “‘Well, shouldn’t I tell my neighbors, and friends and family in my town about this bug and this disease?’ and I kid you not his exact words to me were, ‘Do you know who Typhoid Mary was?’”
“As soon as he said that, I became embarrassed, and ashamed . . . My then-boyfriend said, ‘I wouldn’t tell anybody unless you want a brick through your window.’ So I kept it a secret. I didn’t tell nobody. [But] I did a couple of interviews with the local paper and didn’t use my name because I wanted people to know.”
Stark’s confidence has grown over the last two years, though, especially as she’s learned more about Chagas. “And [I’ve] asked everybody, and no, you cannot get it sexually, you cannot get it from drinking after me . . . I’m not going to give it to anybody. I’m not going to give it to ’em if I sneeze on ’em or anything else.”
And if Stark still worries that she’ll be ostracized, she doesn’t worry about it nearly as much as she worries about people not getting tested before donating blood and organs, or before having a child — the ways the parasite can be communicated between humans.
“I know I’d given blood before — but because I could not remember how long ago it was, when it stated on there, ‘Have you ever given blood?’ I put no. And that was the reason they tested. Had I put yes, they would have taken my blood and given it to somebody!”
Debbie Hinkley, Stark’s best friend, arrives at the bar with a portable filing system filled with more paperwork than I have accumulated for my last 10 years of taxes. This is what happens, I think, while taking in the mound of paperwork, when only the CDC can help you, since the government organization controls all clinical trials of Chagas and the drugs needed are not approved by the FDA.
It’s immediately clear that Stark and Hinkley have held forth on Chagas as a team before. Hinkley is a registered nurse and accompanied Stark to many of her early doctor visits, and in the last six months, the duo has traveled to speak at conferences all over the country, including a presentation to the Food and Drug Administration in Washington, DC. A presentation closer to home, in La Grange, however, was met with a mixed reception from doctors who chalked it up to fear-mongering.
But in her own treatment, Stark was spared the sort of pushback from disbelieving doctors that others have reportedly faced. “When I called and told [the doctor], he was almost thrilled that he would have a patient. I was fixin’ to turn 50, which is scary, because from the stuff I’d read, it said once you’re over 50 you may not get the medicine, but [the doctor] didn’t hesitate. He gave me benznidazole,” one of only two medications available to treat the disease.
In a humorous twist on doctor-patient confidentiality, Stark hands me a form with test results and a packet of empty prescriptions, saying, “Don’t look at the doctor’s name on that.”
She continues, “I was to take it for 60 days . . . [but] they could only give me two weeks’ worth at a time . . . There were supposed to be all these side effects, but you know, I didn’t have any side effects. None of that losing weight or throwing up or getting sick. The only [side effect] I can think of is I tired easily, which I still do.”
“And anxiety,” Hinkley adds knowingly.
“I have lots of anxiety. I have a lot of pressure,” Stark waves in front of her chest. “It’s something I Google every day for updates. Mentally, it’s on my mind all the time. It’s on my mind that doctors do not know.”
In addition to the expected fear of mortality — the knowledge that there’s yet another way to die that she may not have considered before — Stark feels incredibly alone. In an age where there there are communities, both online and in person, built around every hobby or affliction, it’s surprising that there is no Chagas support group, no Chagas forum, no one that Stark can talk with as anything other than a specimen. It is especially odd given that Chagas is a common disease in Latin America.
“When we flew to Washington to the FDA, I met another woman with Chagas, she didn’t get it here, she’s from El Salvador . . . And when I was registering to go into the meeting and I seen her name I said, ‘All right! Finally someone else with Chagas,’” Stark says. “Not because I wish it on anybody, but because I’d have somebody to bond with. I don’t want anybody to go through what I went through. Which is to knock on that door and no one answers because they don’t know the answer.”
Stark tears up a little, and for the first time in our conversation, the psychological weight of the disease is evident. It is an interesting conflict — to believe both that you are the only one suffering from a rare disease and that this disease is not so rare. That others are walking among you unaware.
“I had to go every two weeks to get my medicine . . . On the [second to] last trip, I said, ‘Well I’ll see you in two weeks.’ And [the doctor] said, ‘I don’t need to see you in two weeks.’ I said, ‘Well what about my blood tests to see if the medicine worked?’ He said, ‘There’s not going to be any more because it’s still going to show that you’re infectious.’”
“But,” I interrupt, “didn’t the medicine take care of it?”
“The problem with all this,” Stark says while sipping from the largest white Russian I’ve ever seen, “is that for the medicine to work you have to get it in the beginning stage, within the first eight weeks of being infected. Well, I don’t know when I was infected. It could have been years ago, it could have been last month, but from the time I first seen my doctor, [to the day I got the medicine], it had been six months.”
Hinkley explains, “The CDC does not just give you the medicine. [Stark] had been tested by the blood bank, then she was tested by her doctor, then CDC wanted their own test. So right there is six weeks. And then CDC said okay, and she had to go back and get more labs to be sure her body would be able to tolerate it. Six months later [she gets the medicine], and that’s one thing that needs to change. The other thing that needs changes is that when you give blood at a donation center, they don’t test you [every time] — they only test the first time.”
“And they say there are 300,000 people out there with the disease. These are people that have come over to the United Sates with it, or were carrying it and then the mom got pregnant and the baby has it now.”
Yet Stark is delightfully, maybe irreverently, optimistic. She describes her desire to spread awareness as her new life’s purpose:
“If I could make a living walking around telling people about this disease and my experience, would I? Yeah, I would . . . everybody talks about their purpose. I didn’t see a purpose. Never have.
“Some people, their purpose is to have [children] because they’ll become president, or find a cure for cancer. Well, my kids ain’t done any of that. I’m proud of my three kids and my four grandbabies, but was that my purpose? I didn’t know what it was, until six months or so ago when I talked to Debbie and I said, I think this is my purpose. That’s why I’m ready to come out . . . I think me being one of very few people with Chagas was my purpose. And I’m hoping that I can help spread that word.
“Because bottom line: Why did I finally come out [about having Chagas]? Because I don’t want my kids to get Chagas disease and not have a doctor to go see. I don’t want my kids to need blood one day and be in the hospital and receive blood from somebody that had Chagas.”
Referencing the enormous public response to the Zika virus, the once-unfamiliar but now infamous vector-borne tropical disease that has been associated with severe birth defects like microcephaly, Stark says, “Maybe we need to go in a different direction, maybe instead of me standing up there saying I have Chagas, maybe I need to grab some baby that’s got Chagas because their momma had it, or they were laying in the baby bed and the bugs come out and bit the baby, and maybe we’ll get something. You can’t be embarrassed about it anymore.”
“We give lectures and tell everyone: Go get tested! If you have a loved one with heart problems, get tested. People are dying every day from heart attacks and they just assume maybe it’s their age,” says Stark. “If I keel over dead tomorrow with a heart attack they may say, ‘Well, she was a smoker.’ Well, smoking may not have killed me. It may have been Chagas disease.”
Lead image: Large-scale anatomy of a heart that has been damaged by chronic Chagas disease. All images courtesy of Wikimedia Commons.