Dr. Ruiz had arranged for us to meet with Dr. Julio Rafael Cabrera at Hospital Universitario Esperenza (Hope Hospital), which is a private hospital in Guatemala City. Dr. Cabrera is the head geneticist at this hospital, and teaches one of the 2 genetics courses available to medical students in Guatemala. Genetics is not normally included in medical school curriculums in Guatemala. Dr. Cabrera did his training at the Childrens Hospital of Boston, and feels very strongly that doctors in Guatemala should be educated in genetics. His main message to us was that he wants to begin a genetic counseling training program through the medical school at the University of San Carlos. We also discussed that if this was not possible in the short term, another avenue would be to train nurses, social workers, or psychologists in genetics.
Dr. Cabrera is very enthusiastic about genetics and it seems as though he provides high quality care to his patients. However, he works in a private hospital, and professionals like him often do not exist in the many public hospitals in Guatemala.
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| Dr. Ruiz, Gillian, Dr. Cabrera, Caroline, Ny, Lindsey |
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| Outside of the Hospital |
Coincidently, 2 members of the Guatemala Fragile X foundation arrived to meet with Dr. Cabrera just as we were leaving. They were there to discuss their plans for opening a Fragile X clinic at Hospital Esperenza. These women were coordinators for a Fragile X screening program in Guatemala. Over the last 3 years, 162 patients were screened, and 38 results were positive. The purpose of the future clinic is to provide these patients and their families with result consultations and connect them to recently available therapies. We had a chance to sit down with them briefly and hear their personal experiences with Fragile X. They had very strong views about the joys of raising a child with Fragile X. They referred to this diagnosis as a gift from God, and they are better people because of it. These views seemed to influence their attitude towards prenatal diagnosis of Fragile X, and reproductive options.
Lunchtime conversation centered around the treatment of Spina Bifida in Latin America, with Dr. Graciella Mannucci, a native of Argentina who has been practicing in Guatemala City for 10 years. She showed us pictures of her new clinic, and expressed her frustration at not having the human resources to staff it, thus the brand new clinic remains unused. She also indicated that prenatal diagnosis is not utilized for families at risk of having a second child with this condition. They indicated to us that since Spinda Bifida is a treatable condition, continuing a pregnancy is the only legal option.
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| GenetAssist and the Spina Bifida team |
Our next stop was the auditorium at INCAN (Instituto Nacional de Cancerologia de Guatemala), for a formal presentation by Dr. Eddy Gonzalez, the project director for Unidad de Genetica Humana. As one of the first Guatemalan students to recieve a scholarship to study medicine and genetics in Spain, Dr. Gonzalez has returned after 7 years to develop genetic services throughout Guatemala. Services areas include: dysmorphology, infertility, prenatal diagnosis, hereditary cancer, and personalized medicine. Dr. Gonzalez says that 60% of his goals have been completed over the 10 months that he has been working in Guatemala. This is largely due to partnerships with many countries, including Mexico, the United States, the United Kingdom, and Spain.
Two weeks ago, Dr. Gonzalez opened the doors to the first cancer genetics clinic in Guatemala, focusing on breast, ovarian and colon cancers. The only other available cancer genetics clinics in Latin America are located in Mexico, Argentina, and El Savador. So far, he has seen 3 patients for assessment of hereditary susceptibility to cancer. He follows a standard protocal for the management of hereditary cancers.
He shared many personal thoughts with us regarding the challenges of starting genetic services in Guatemala. Here are a few memorable quotes:
"...with this dark picture [no genetics education], we still have everything to do."
"I am only one man with 2 hands and one head... and my head doesn't work very well!"
"Health professionals think genetics is science fiction."
"At a conference, the American speaker starts with a joke, the European starts with a phrase, and the Latin American starts with an excuse!"
There are 2 main reasons why there is no interest in genetics from health professionals in Guatemala:
1. They don't know about it
2. They are resistant to change
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| GenetAssist at INCAN |
On a final note, it was a rollercoaster of a day in terms of the emotions that we experienced. One minute it was overwhelmingly sad and the next, upbeat and optimistic. It is very encouraging that all of the individuals we have met with so far share the passion for genetics that we do, and are all interested in the help that GenetAssist can provide.
To end off a very satisfying day, we enjoyed a delicious Guatemalan meal with Lindsey and Gladys' fathers!
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| Dinner entertainment |
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| Diners |
Until next time,
The GenetAssist Team
What an amazing project and a great foundation that you are laying! Good luck with all.
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