Hope, resilience and a T1 activity day
It was a sticky, humid day in Colombo, Sri Lanka when I met Kassun.
I was visiting the Sri Lankan Diabetes Association to meet young people supported by the program and the health professionals caring for them. The association had arranged for me to see the kids with the biggest challenges, none with HbA1c below 11.5%.
One of the first patients I saw was Kassun, he was diagnosed with type 1 at 6 years of age. He was a really bright young man, full of hopes, dreams and smiles but is struggling with the challenge of managing his diabetes. He has been admitted to hospital with severe hypos and in DKA many times.
Kassun doesn’t receive any financial support from his family and, as he struggles to find regular work, wouldn’t be able to afford his insulin and test strips if it wasn’t for Life for a Child. Thanks to your donations we are now able to help Kassun with his management, ensuring that he has access to a regular supply of insulin, education and support through the diabetes centre.
Kassun now thinks of the centre as his home away from home, and obviously feels very comfortable there. He would travel through the night on a bus from miles away, just to come to clinic and did so these on two consecutive days while we were there.
On the third day of my visit we held an activity day at the centre for sixty-six young people aged between 6 and 26 years old. At the beginning of the day the girls sat to one side of the room and the boys opposite to them – everyone was very quiet and no one mingled at all. However, after a packed day of motivational talks, small informal group discussions, team-building games and a parent Q& A session, things changed. Everyone was singing and dancing, laughing, chatting and having fun. This was so heart-warming to see and demonstrates the power of peer support. Kassun attended the activity day, and as one of the oldest in the group, he was always running around, generally helping and looking after everybody.
During my visit to the centre I also had the opportunity to visit the home of two sisters, Nuzaira and Nazara who have been supported by the program and are now doing really well. Nuzaira was diagnosed age 10, is a teacher and has a 6 year old daughter. She was very happy to chat to us and share her experiences of living with diabetes, she told us she once fainted in front of her class with a hypo – luckily the headmistress knew what to do to help her. The sisters and their mother made us feel very welcome and were so grateful for the support your donations provide.
For me, the visit really reinforced the importance of the support we give to these children in this wonderful but under-resourced country. Not only are we saving lives with the insulin we provide, we are making it possible for these young people to lead normal lives and follow their dreams to become teachers, carpenters, parents and doctors. Thank you.
Type 1 in Pakistan
Yasir comes from a poor family, and lives in Karachi with his parents, and four brothers and sisters. His father is a laborer and his mother has her own business selling home-made snacks. Because of their low income and the high cost of diabetes supplies his family simply don’t have enough money to buy the insulin and tools Yasir needs to stay alive.
Life for a Child steps in to provide him with the tools he needs to manage his diabetes which includes his twice daily regimen of short and long-acting insulin and the strips he receives when he attends clinic every month.
Angie first met Yasir in 2015 when she visited the National Institute for Children’s Hospital in Karachi, Pakistan. We are pleased to report that, two years later Yasir is doing well and these photos show him at his most recent clinic visit. He does, however, have persistently high blood glucose levels, and is undergoing testing for Coeliac Disease.
Yasir and his family do get very frustrated with his diabetes and wish it would go away. However, they realise that he must take his insulin and monitor his blood glucose level. He attends school regularly and is at the correct grade for his age, although, he is shorter than his friends which makes him feel different.
If it wasn’t for the support of Life for a Child, Yasir’s parents would be unable to afford diabetes supplies.
Yasir’s story is full of hope and is just one of thousands empowered by donations from people like you.
To donate $1 a day to support a child like Yasir click here.
”I thought that I may have been refused as I have type 1 diabetes..”
Estephany is a young girl supported by the program in Guatemala. She wanted to share her story to encourage younger children living with diabetes:
”My name is Estephany and I was diagnosed with type 1 diabetes in June, 2009.
At the time I was studying 5th grade at school. My teachers and classmates were all worried about me as I was absent from school and supported me following my diagnosis.
Throughout high school I never faced discrimination and was able to attend school camp with my friends. Everyone, including my friends were very encouraging and thought I was brave injecting myself and regularly testing my blood glucose level.
When I decided to study nursing I thought that I may have been refused as I have type 1 diabetes, however, this was not a problem, and I am enjoying the course.
I am so thankful to have all these excellent people to help, including my diabetes team.
I can do anything!”
Support from people like you has helped brighten the world of Estephany, there are many more young people that still need our help, join us and donate Now.
Diabetic Ketoacidosis (DKA) occurs when there is profound insulin deficiency. It frequently occurs at diagnosis, and also in children and young people with diabetes, if insulin is omitted, or if insufficient insulin is given at times of acute illness.
It is quite likely that some children and youth in developing countries, presenting for the first time in DKA, die undiagnosed. The symptoms they present with may be diagnosed as more common illnesses such as pneumonia, gastroenteritis, malaria or typhoid. Even when the correct diagnosis is made, it is sometimes too late, and the young person can die or suffer permanent damage.
To combat this the Life for a Child Program developed a poster campaign, depicting symptoms of DKA, to alert health professionals and help them to make a swift diagnosis and provide appropriate treatment to save lives – championing the vision that no child should die of diabetes. Health professionals are the key target audience for this campaign with posters put up in common areas such as hospitals and community centres.
One of these posters is in Twi and Dagbanli, local languages of Ghana, who also participated in this campaign. The importance of the message is illustrated by this comment from a doctor in Kumasi, Ghana: “Several of these children with diabetes are dying unrecognized. It is only education to create awareness that will save many of these children.”
Dr Graham Ogle recently visited a centre we support in Haiti, where we have been providing support for young people with diabetes since 2010. Below are some of the diabetes education materials depicting symptoms of diabetes, hypoglycaemia and others in the local languages, Creole and French.
You can see all 28 posters developed by LFAC since 2012 here: www.idf.org/lifeforachild/education-resources/dka-awareness
Help us increase awareness of DKA by making a donation today.
Our colleague, Aracely Basurto, from FUVIDA diabetes center in Guayaquil, Ecuador, was contacted via Facebook by a young girl called Darlenis, seeking advice. Darlenis is the only young person with T1D on San Cristobal Island, in the Galapagos Archipelago, so has very little support regarding her diabetes management.
There are no specialist doctors which means that Darlenis must travel to Guayaquil in Ecuador for annual appointments. This is very expensive for the family.
Aracely says “Darlenis does not have test strips for glucose control, so every morning, noon and night she has to walk four blocks to the health center to check her blood glucose, returns home, and injects her insulin, prescribed by the doctor.”
These doses of insulin are fixed, and can only be changed by the doctor, so she must take the same dose which allows no flexibility for what she eats and the exercise she does.
On one occasion, Darlenis woke up feeling ill. Her father took her to the Health Centre, however, they had no test strips. Darlenis went home and drank some juice but felt no better so they had to travel to another island, Santa Cruz, two hours away.
There was some delay at the health center because a doctor had to order the blood glucose to be checked. By this time Darlenis’s father was frantic. Eventually she was allowed to check her blood glucose. A severe hypo was thankfully avoided.
This illustrates how the complex Darlenis’s situation is and the difficulties she and her family face.
The staff at FUVIDA have provided testing equipment from Life for a Child, and have taught Darlenis and her family food label reading so that she can adjust her insulin according to what she eats and her exercise. Acracely: “She learned that by making a proper count she can eat the food she wants and so far had been told
that it was forbidden.”
Aracely adds: ‘There are many cases like Darlenis. Children are exposed to a health system that does not accept them responsibly, and unfortunately, with this poor control, life is shortened and the chances of survival are reduced by half.’
The diagnosis of a child with diabetes can be scary and overwhelming for families anywhere in the world. Imagine having three children in one family, all diagnosed at a young age. This is what happened to a family in Indore, India.
Shivani, a diabetes educator and dietitian tells us, ‘’Divit being the eldest takes care of his both brother and sister. Not only does he puts his insulin and check sugar by himself, he does the same for both his brother and sister. We have given separate glucometers, strips and lancets to all the 3, and he takes well care to keep each one’s kit separately’’
They are a farming family on a very low income, so having three children places a considerable burden both financially and emotionally. This is where Life for a Child and The Radiance Clinic come in. We send diabetes supplies to the clinic where Dr. Sandeep and his team keep a close eye on the family.
Aditi is 10 years old, Divit is 13 and Faiyaz 7, the photo above shows the family at the clinic receiving supplies in January 2016 and the photos below show them a year later, at the beginning of February. They are persevering with the constancy of diabetes and doing well.
You can help to support families like this one by participating in the Spare a Rose, Save a Child campaign.
Conducting a camp or activity day can be very daunting for diabetes centers in less-resourced countries so we encourage all the centers we support to start small, think about doing a 2 hour support group and build from there. We give comprehensive guidance and support for the first activity, and offer a manual and ad-hoc advice for subsequent activities.
Just as in more economically resourced countries; the impact camp has on young people, cannot be underestimated:
“Then I went to camp – it was stunning. Everyone had to test their glucose and take insulin. For the whole day everyone is the same. Each summer I became closer with other campers who are now some of my best friends. I wasn’t alone, the feeling was beautiful”. Nweke, Nigeria
Nweke was 14 years old when he was first seen in the children’s emergency room in DKA 8 years ago. He was subsequently diagnosed with diabetes and supplied with insulin and strips by Life for a Child. He is now doing well and was one of the finalists in our Art competition held in 2015.
When Kate Souris, a masters of public health visited Bolivia and Life for a Child’s partner centre, El Centro Con Vivir, she reported that the education and resources provided at the diabetes centers and summer camps, ”are a relief to children and parents alike. As children learn to take more responsibility for their management and share with each other, seeing that they are not alone, parents may be able to let go of some of the fears that come from being a primary caretaker. Peers can educate and inspire among themselves, helping each other to take the condition more seriously, while providing the relief that can only come from being understood on a core level. I asked Camilla, a young girl supported by Life for a Child: “How is it to have friends at camp who have type 1 diabetes?”, she said; ”It’s a relief”’.
Make a donation and help us send more kids to camp.
Imagine not having a refrigerator to store insulin! This is the situation for many young people living with diabetes. In some countries, evaporative cooling using clay pots are an alternative to a refrigerator.
No one really knew how efficient these alternatives were so Life for a Child conducted a study in Khartoum, Sudan to find out. Thirteen devices were used in seven countries (10 clay pots, a goat skin, a vegetable gourd and a bucket filled with wet sand), and two identical commercially manufactured cooling wallets were compared.
All devices reduced storage temperatures, with some being more effective than others. More cooling is achieved at lower humidity. Further studies would help to determine insulin stability using alternatives to refrigerators.
Click here to read the abstract: “Insulin storage in hot climates without refrigeration: temperature reduction and efficacy of clay pots and other techniques”
Contact: email@example.com for a copy of the publication.
At age four, Yasir was rushed to hospital in Karachi, Pakistan where doctors realized he was in Diabetic Ketoacidosis. He was diagnosed with type 1 and, for the next few days stayed in hospital and, along with his parents, learned how to manage his diabetes.
Yasir’s family simply couldn’t afford the cost of the insulin and tools he would now need to live with this overwhelming change in his life.
Life for a Child was able to step in and supply him with a blood glucose meter, and a regular supply of insulin and test strips. Life for a Child also ensures Yasir is seen every three months to check growth and development and receive diabetes education.
Without support from Life for a Child, it is likely that Yasir would not have survived far beyond his diagnosis. You can support children like Yasir by donating to the Spare a Rose campaign here.
What a group! At the recent Fundacion Diabetes Juvenil Ecuador annual camp, young people of all ages living with diabetes came together to make friends and have fun. Activities at camp are age appropriate and there are loads of opportunities for incidental diabetes education.
Here you can see Miguel learning about carb counting and healthy food choices and team games with the girls.