Living with Chagas
Coping and Well-Being
The idea of living with Chagas disease can cause a lot of worry and concern. Chagas is a whole health disease, affecting humans, canines, wildlife, and plants. Below are a few tips to help manage your Chagas disease and emotional wellness:
- Regular check-ups.
While the majority of people with Chagas disease will never develop heart disease or other complications, it’s important to go in for regular check-ups. - Communicate with your provider.
Identify any concerns before they worsen and discuss your concerns with your provider.
- Connect with other patients.
It may help to speak with others living with Chagas disease or get involved in patient groups.- FINDECHAGAS https://findechagas.org/home-en/
- The Latin American Chagas Society (LASOCHA) https://lasocha.org/es/about-us/
- Reach out.
It may be helpful to talk to a counselor or other professional.




How to talk to your doctor about Chagas disease?
Chagas disease is a neglected disease, and unfortunately, many providers are unfamiliar with it or do not believe it is present in the U.S.
If you think you are at risk for or have Chagas disease, tell your provider you would like to be tested. You may refer them to the CDC’s webpage on Chagas disease: https://www.cdc.gov/parasites/chagas/
Where to find a doctor...
Chagas Physicians
Network
If you have already been diagnosed, discuss your diagnosis with your primary care provider and discuss treatment options. You may need to seek out a specialist for further tests and treatment.
Resources for Health Professionals
Guidelines and Recommendations
- Recommendations for Screening and Diagnosis of Chagas Disease in the United States
Colin J Forsyth, Jennifer Manne-Goehler, Caryn Bern, Jeffrey Whitman, Natasha S Hochberg, Morven Edwards, Rachel Marcus, Norman L Beatty, Yagahira E Castro-Sesquen, Christina Coyle, Paula Stigler Granados, Davidson Hamer, James H Maguire, Robert H Gilman, Sheba Meymandi
https://pubmed.ncbi.nlm.nih.gov/34623435/
- Guidelines for the diagnosis and treatment of Chagas disease
Pan American Health Organization (PAHO)
https://iris.paho.org/handle/10665.2/49653?locale-attribute=en
- Chagas Cardiomyopathy: An Update of Current Clinical Knowledge and Management: A Scientific Statement From the American Heart Association
Maria Carmo Pereira Nunes, Andrea Beaton, Harry Acquatella, Caryn Bern, Ann F. Bolger, Luis E. Echeverría, Walderez O. Dutra, Joaquim Gascon, Carlos A. Morillo, Jamary Oliveira-Filho, Antonioff Luiz Pinho Ribeiro, Jose Antonio Marin-Neto and On behalf of the American Heart Association Rheumatic Fever, Endocarditis and Kawasaki Disease Committee of the Council on Cardiovascular Disease in the Young; Council on Cardiovascular and Stroke Nursing; and Stroke Council
https://www.ahajournals.org/doi/10.1161/CIR.0000000000000599
Clinical Management
- Evaluation and Management of Congenital Chagas Disease in the United States
Morven S Edwards, Kelly K Stimpert, Stephanie R Bialek, Susan P Montgomery
https://pubmed.ncbi.nlm.nih.gov/31016324/
- Treatment of Chagas Disease in the United States
Sheba Meymandi, Salvador Hernandez, Sandy Park, Daniel R Sanchez, Colin Forsyth
https://pubmed.ncbi.nlm.nih.gov/30220883/
- CDC Resources for Health Professionals
https://www.cdc.gov/parasites/chagas/health_professionals/index.html>
Epidemiology and Research
- Our Current Understanding of Chagas Disease and Trypanosoma cruzi Infection in the State of Florida — an Update on Research in this Region of the USA
Norman L. Beatty, Colin J. Forsyth, Nathan Burkett-Cadena & Samantha M. Wisely
https://link.springer.com/article/10.1007/s40475-022-00261-w
- Autochthonous Chagas Disease in the United States: How Are People Getting Infected?
Norman L Beatty, Stephen A Klotz
https://pubmed.ncbi.nlm.nih.gov/32602437/
- Prevalence of Chagas Disease in the Latin American-born Population of Los Angeles
Sheba K Meymandi, Colin J Forsyth, Jonathan Soverow, Salvador Hernandez, Daniel Sanchez, Susan P Montgomery, Mahmoud Traina
https://pubmed.ncbi.nlm.nih.gov/28329123/
FAQ
Most frequent questions and answers
If you think you may have found a kissing bug in your home, do not touch or squash it. Place a container over the bug and slide the bug inside. Then, fill the container with rubbing alcohol or place it inside a freezer. Take the container with the bug inside to your health department or a university laboratory so they may identify it.
Thoroughly clean surfaces that have come into contact with the bug (1 part bleach to 9 parts water or 7 parts ethanol to 3 parts water).
- You may be at risk if you:
Have lived or traveled to Central or South America, or the Southern United States (including California, Texas, Florida, Arizona, and New Mexico). - Were born in or lived in a house with dirt flooring.
- Were born in or lived in an adobe house.
- Have seen or been bitten by a kissing bug.
- Were born to a mother infected with Chagas disease before or during pregnancy.
You can get tested here
Janeice’s Story
I WAS KISSED BUT, IT WASN’T A FROG!
Vacations were a priority in my family of eight. Growing up during the ’50s, ’60s, and ’70s in middle-class America seemed pretty traditional; church, public school, extracurricular activities, and summer vacation. Yes, everything that happened during the school year validated that no matter what, there would be a family vacation in the summer.
You can imagine the process of preparing a family of six children for the adventure my dad had planned for months, taking us to new and undiscovered territory, one that he had not even experienced.
In those days, it was not uncommon for families to tent camp on vacation. All the national parks had camping facilities and there was no big chain hotel. Tent camping was the most affordable way to travel, and my family took advantage!
We had the baby blue and white Plymouth station wagon with a homemade topper and a large army green tent. A red and white cooler, a Coleman stove, shared suitcases, sleeping bags, flashlights, and bug spray were methodically placed for easy access.
In the summer of 1965, our family anxiously set off for an unfamiliar adventure, one that would change my life forever. One of my older sisters, Diana, had taken Spanish the previous year and she was going to be our interpreter. Yes, we were off to Mexico. We left Nashville and camped along the way to Glorietta, N.M., for a week at the Baptist Conference Center. Following that, we continued our journey, traveling on two-lane State highways, through the deserts, stopping to camp at the Grand Canyon, Albuquerque, Petrified Forest, Painted Desert, Carlsbad Caverns, and on into “Old” Mexico. We stayed at a luxurious resort in Monterey, Mexico, which was less expensive than camping in the US! We were truly in heaven! Souvenir shopping, a bullfight, windows down while driving through rural Mexico, encountering dust flying as we drove along.
The sights were endless, watching young dark-tanned and half-dressed children playing in the road,
chickens and goats roaming freely, and hefty women
sitting outside small huts, weaving colorful blankets or
making silver and
turquoise jewelry.
These images will forever remain in my mind.
A word of caution to not drink the water, was welcome as it meant more soda, which we seldom had the pleasure of at home.