Life for a Child (LFAC), part of the International Diabetes Federation (IDF), helps more 14,000 youth in 46 countries who have type 1 diabetes.
According to LFAC’s website, “Lack of access to insulin remains the most common cause of death in a child with diabetes…Many die undiagnosed, others through lack of insulin or lack of expert care. In some countries, expert care is available but resources are limited and so early and serious complications frequently lead to death in young adulthood.”
In Guayaquil, Ecuador, LFAC supports FUVIDA (Fundación para Vivir con Diabetes or the Foundation to Live with Diabetes), which was founded in 1998 by Aracely Basurto, whose daughter, Andrea, now 22, was diagnosed at age two with type 1 diabetes. LFAC sends insulin, blood glucose monitoring supplies, and diabetes educational materials to support youth in FUVIDA’s care.
One family’s story shows the devastating impact that the lack of doctors’ knowledge of type 1 diabetes has in Ecuador, as well as the impact of the government’s payment for treatment of diabetes complications but not for education or prevention.
In June 2014, a 14-year-old girl had a positive test for keytones and was kept in the hospital for 85 days due to the fact that the doctor was under-dosing her by giving her only 2 units of NPH insulin per day. With guidance to give the correct type and dose of insulin to kids, Aracely can almost always help a child get rid of keytones within one day. The family finally called Aracely and she had to bring them insulin and tell them what doses to give their daughter. They had to hide it from the hospital staff. The girl was discharged within a few days. When she finally was allowed out of bed, she couldn’t walk because she had lost so much muscle mass.
Aracely thinks that many children in Ecuador die because doctors are following the wrong treatment protocols. The girl’s father recently wrote an email to Aracely (pictured above) thanking her. His email said, “When all doors were closed and I was resigned to losing her, you were the only one that gave me hope; you will always be the one that returned hope to life.”
A similar event happened with another FUVIDA patient who was in the hospital for an appendectomy. The hospital wouldn’t let him inject fast-acting insulin, only 2 unites of NPH per day. As a result, his blood sugar was high and the staff would not discharge him. So Aracely brought him fast acting insulin and helped him bring down his sugar. He was discharged within a few days.
Aracely thinks the government doesn’t know how many kids are dying from diabetes in the hospitasl because the hospital will record that the kids died of something else, such as a pumonary event.
On Friday, Nov. 14th, the rotunda at Guayaquil’s riverside malecon was illuminated in blue in honor of World Diabetes Day. A LFAC patient and mother spoke, and two new patients came to the event. Maria del Carmen asked about their current care, and told them when to come to the next LFAC event.
On Friday, Nov. 14th, in honor of World Diabetes Day, FUVIDA and the Ecuadorian Ministry of Health hosted a symbolic walk at Guayaquil’s Hospital Universitario that ended in participants forming a circle, the symbol for diabetes support. After the walk, participants joined a “Dance Therapy” event, and were encouraged to exercise 3 times per week.
Aracely, Andrea, and Dr. Carlos Solis Sanchez, and endocrinologist who works with the Ecuadorian Ministry of Health, gave interviews to the press to promote diabetes awareness.
Dr. Sanchez and other doctors then presented on various themes, including how to prevent diabetes complications. Presentations were followed by a Q&A.
There are no hard numbers of how many people in Ecuador are living with type 1 diabetes, and how many are diagnosed each year. On Thursday, Nov. 13th, the local press ran several diabetes awareness articles in honor of World Diabetes Day. The article reported nationwide diabetes figures, but didn’t separate type 1 from type 2.
Dr. Carlos Solis Sanchez, an endocrinologist who works for the Ecuadorian Ministry of Health, said that he had been at an endocrinology conference in Quito the day before, and very rough estimates put the number at between 5,000 and 10,000 people living with type 1 diabetes in Ecuador. (There are an estimated 500,000 with type 2 diabetes). Dr. Sanchez said two projects are underway to get more accurate statistics.
Dr. Sanchez and Aracely are involved in a project to build a program to certify diabetes educators in Ecuador, in partnership with the Hospital Universitario and Universitario Catolico.
Dr. Sanchez (shown in the bottom picture above, with from left Molly Lopez, Aracely, an event volunteer, Andrea and another event volunteer) spoke at the Friday panel on diabetes at the Hospital Universitario, where he said 30 people are currently in the hospital for type 1 diabetes related issues.
Jonathan P., 22, was diagnosed with Type 1 diabetes when he was 20-years-old. A black belt in karate who competed on the national level, he was told by his trainer and doctor that he had to quit karate after his diagnosis.
In May of 2014 (see top photo above), Jonathan arrived at Aracely’s house for help in controlling his diabetes. Aracely asked how long he thought he would live, and he responded, “Not long, maybe four or five years.” She pointed to her daughter, Andrea, and said, “She has had diabetes for 21 years!” He was shocked. Aracely gave Jonathan, who had lost a lot of weight since his diagnosis, a meal of rice and chicken, and showed him how much insulin to inject.
Within a few months, he had gained back the weight and was again practicing karate. He recently debuted as the June photo in FUVIDA’s awareness-raising calendar (see bottom picture above) with his young daughter, as a tribute to the month of Father’s Day.
Much of FUVIDA’s work is done out of Aracely’s home (pictured above).
FUVIDA also has a small 2-room office space in Guayaquil where parents can attend small group classes, and where Aracely trains the “Mother Leaders” of FUVIDA to run classes for other classes.
Aracely and her daughter Andrea, who has had diabetes for 21 years, at a press event for FUVIDA’s calendar. Andrea spoke with the group to counter impressions that diabetes always leads to severe complications and early death. In contrast, she shared her experience of living healthily for more than 20 years with diabetes.
Approximately 3-5 new people with Type 1 diabetes, or their families, contact Aracely for help each week. On Wednesday, Nov. 12, a 19-year-old found FUVIDA’s Facebook page and sent a Facebook message requesting support.
On Tuesday, Nov. 11, Aracely hosted a parents’ group meeting at the FUVIDA offices after work. Also joining the meeting were two doctors, a nurse and a pharmacist. Parents discussed pressing needs to better care for children with diabetes in Ecuador, including better education for medical professionals, a certification program for certified diabetes educators, and a dire need for more diabetes education for patients and families. Many spoke of their children’s diagnosis being followed by 10 minutes of explanation by the doctor, and going home with little idea of how to care for their children. All spoke of finding FUVIDA as a turning point in the lives of themselves and their children, because they learned to manage diabetes and live healthy lives.
One mother spoke of her son’s diagnosis at 9-years-old. They barely knew how to inject insulin when he left the hospital. After he attended FUVIDA’s week-long summer camp, “he was a different person,” says his mother. “He came home and knew how to inject everywhere, and understood how to give himself insulin doses in proportion to what he eats. It completely changed his life.”
Aracely and Roxana Vizcaino (and Molly Lopez in the 3rd photo) promote the FUVIDA calendar, which depicts children, adolescents and young adults living healthy lives with diabetes. Ecuadorian TV personality Andre Jungbluth has also promoted the calendar, appearing at the press conference held on Nov. 12th at the Sheraton Hotel in Guayaquil, and later speaking with Aracely and Roxana on a radio show.
The calendar serves two purposes. First, it shows people in Ecuador that it’s possible for kids to live healthily with diabetes. In a country where parents are often told by the hospital doctors that their child will be dead within just a few years, it’s vital to publicize the fact that with the right care, children can live for a long time.
Second, Aracely promoted the calendar to the Ecuadorian press, in order to broadcast around Ecuador that youth with type 1 diabetes can come to FUVIDA for insulin, other supplies and education.
A rural lunch in Ecuador, consisting of chicken soup with corn and potatoes, and a plate of rice and beans and pasta.
Following the FUVIDA event in Puerto Viejo, we stopped for lunch at the home of one of the families supported by FUVIDA. Their son, who has diabetes, had already fallen asleep in the hammock by the time we arrived. His family served tripe stuffed with rice and sliced horizontally (“salchicha seca”), sliced plantains, and coconut milk.
Juan Carlos Cevallo who has had diabetes for 13 years and now coordinates FUVIDA activities in Puerto Viejo, holds a 4-month-old boy who was diagnosed with diabetes when he was born.
Juan Carlos checks the news everyday for progress towards finding a cure. He’s hopeful about recent advances in stem cell research, and predicts a cure will be found in the next 10 years.
The parents of a 4-month-old boy who was diagnosed with diabetes at birth test his blood glucose level by pricking his heel. The baby didn’t cry at all during the heel stick. His parents said that it was very expensive and difficult to buy supplies before they found FUVIDA.
Three boys with diabetes (top photo) get supplies and education at the FUVIDA event in Puerto Viejo. Josue, 12, middle, and Alexander, 14, right, share a love of soccer and chicken with rice. They’ve learned, “how to inject, and about nutrition,” from FUVIDA, says Alexander.
After the event, Michelle (pictured below) cried for a long time with her mother and Aracely. She still finds the insulin injections unbearably painful, and despite rotating injection sites, has lumps under her skin. She prefers the BD short syringes, but her father can’t afford them. As an alternative, she re-uses the short syringes she has multiple times.
Lis Molina Santacruz, 24, was diagnosed with diabetes when she was 10-months-old. She was able to have a healthy baby, John, now 2, with frequent visits to her obstetrician. “It was very difficult,” she says.
On Sunday, Nov. 9th, FUVIDA held an educational and supply distribution event at a sports center in Puerto Viejo, Manabi. Approximately 50 people came to pick up insulin, test strips and blood glucose testing machines. Aracely spoke with them about the importance of forming a community and supporting each other.
Juan Pablo Romero, 14, an avid saxophone player, with his parents, Brenda Mujica and Javier Romero. Since joining FUVIDA, Juan Pablo, “knows how to take care of himself,” says Brenda. “He’s happier and more confident.”
Nicole Calderon, 4, with her parents, Michelle Saavedra and Alfredo Calderon. When Nicole was diagnosed one year ago, “the hospital told us she could only eat very small portions,” says Michelle. “She only ate things like milk and salad. We learned about carbohydrates from the classes. Now she can eat nutritious lunches and enjoy it. And she wears a watch so she can test her own blood sugar at 10 am at school.”
Annette M.G., 8, with her parents Viviana and Eduardo. When Annette was diagnosed at age six, the hospital told her parents that they didn’t have any insulin in stock to give her, and that their first available appointment to follow-up on her care would be six months later.
By luck, Viviana’s internal medicine doctor is Aracely’s sister. Viviana learned about FUVIDA that day and brought Annette to Aracely’s house immediately, where she was given insulin and taught how to use it. When Annette finally had her first follow-up appointment (6 months after diagnosis), she was given another follow-up appointment for four months later.
Since joining FUVIDA, the family has learned how to manage her insulin so that she can eat a variety of foods. Annette’s current favorite food? Cheese soup.
Christian Z., 22, and his mother, Gisella M. Christian has had Type 1 diabetes since he was 10-years-old. For the last 10 years, he has been getting supplies and education from FUVIDA.
Eunice F., 15, and her mom, Maria Mendoza. Eunice loves to play sports, and currently plans tennis and basketball. She also likes soccer, but it’s not traditionally a sport for girls in Ecuador. This summer, Eunice hopes to attend a diabetes camp.
Aracely shows Flor, 14, who has had diabetes for 3 years, how to use the new blood glucose testing machine that she’s receiving during her first visit to FUVIDA. Wearing a Minnie Mouse tee-short and earrings that say, “LOVE,” Flor says she came to FUVIDA to learn how to better manage her diabetes and avoid going back to the hospital.
Sara, 9, with her mother, Diana C. Sara has had diabetes for four years. Before learning about FUVIDA from hospital staff, “it was terrible,” says Diana. “We couldn’t buy the supplies. Sara was crying because without insulin, she couldn’t eat. I thought she was going to die.“ Now, Sara and Diana get constant education through FUVIDA, along with medical supplies. “Education has helped,” says Diana. “I’m very grateful.“
Once per month, Aracely Basurto rents a recreational space in Guayaquil, Ecuador to teach classes to parents and kids about how to take care of diabetes. Four parents each month volunteer to bring snacks. This month’s snacks were little empanadas and yogurts.
It’s required that parents come to the classes to get the insulin and strips donated by LFAC, so families know how to use the supplies in a healthy way. Aracely has asked families how much insulin they give their child if the child has a blood glucose (BG) level of 400 or 100, and sometimes the answer is the same. It’s vital to give education alongside the insulin, so that the insulin is used safely.
Aracely holds the classes, or “charlas,” in the recreational space so the children aren’t bored. She’s tried holding the charlas in different venues, but without entertainment, the kids were unhappy. So now she rents the space, which has a playground, trampoline and colorfully painted walls, once per month.
To pick up supplies, families sign into the sign in book. Each family’ has a page where Aracely’s son records how many strips and how many bottles of insulin each family receives. If a family already has enough insulin at home, they don’t take more because they don’t want it to go to waste. Some families drive from 2-3 hours away to get the supplies and education.
Rosa T.’s son Joseph is 4 years old and was diagnosed with 2 years ago when he was in the hospital for an unrelated operation. (Rosa and her son are in the bottom picture above). Staff tested his blood sugar and it was 700. At first, Rosa and her husband bought all the supplies themselves. It was financially straining. Her husband was telling someone at work how expensive the medications are, and the person told him about Fuvida. Since May, Rosa and her family began coming to Fuvida.
Before coming to Fuvida, Joseph’s blood sugars were often 200-400, but now that they’ve learned how to manage insulin and food from Fuvida, his blood sugars are much better. They’ve learned how to count carbohydrates and to give the correct dose of insulin. “Before, the baby could only eat special foods,“ says Rosa, starting to cry as she remembers how much he was suffering. “The baby would watch his brother eating other things and would ask why he couldn’t eat it. The baby and me would cry every day. I was lost. Aracely taught me so much. Now the baby eats everything. I’m so happy.”
In Ecuador, many typical dishes include plantains, rice, empanadas and beans. The high carbohydrate meals make it even more essential that children with diabetes understand how to correctly count carbohydrates and give themselves enough insulin to manage what they are eating.
Pictured above is a breakfast of fried egg with a ball of mashed plantains and cheese.