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World Diabetes Day 2019: “Brave children with diabetes”
Type 1 diabetes type I affects children and adolescents, who often find difficulties adapting to this lifelong chronic disease. Patients with type I diabetes suffer from pancreatic insufficiency, meaning that the pancreas does not produce enough insulin, thus preventing blood sugar (glucose) from entering cells and producing energy. The disease also requires periodic monitoring of the blood sugar levels, especially knowing that children affected by diabetes type I are more prone to sudden imbalances which could have serious complications and long-term side effects. As such, MSF gives special attention to this category of patients and is further developing its programs to better cater to their needs.
In view of enhancing the quality of life of type 1 diabetes patients, empowering them, and increasing the level of adherence to treatment, MSF has been adopting new technologies such as the Continuous Glucose Monitoring (CGM) and the insulin pen in its clinics in Lebanon as part of the comprehensive package of care that we provide to diabetes type I patients below the age of 15.
Here are some of the stories of brave children with diabetes we meet in our clinics.
Houssam, Aarsal, Bekaa
Houssam, pictured above, lost consciousness once, which almost led to him entering a coma. It was a tragic moment for his family. When this happened, his parents learned that Houssam suffers from complications resulting from type I diabetes . Since his parents couldn’t afford his treatment, Houssam was transferred to Médecins Sans Frontières’ (MSF) paediatric ward at the Elias Hraoui Governmental Hospital in Zahle for hospitalisation. After stabilising his case, he was referred to MSF’s clinic in Aarsal to receive regular care for diabetes. Houssam is now enrolled in the continuous glucose monitoring programme.
“We had so many concerns about diabetes type I. Lots of people were telling us that diabetes will have serious long-term complications”, says Mohamad, Houssam’s father. “I spoke with the MSF doctor about these concerns, and he reassured me that as long as Houssam is adhering to the treatment and following a healthy lifestyle, he will not have complications and he should be able to live a normal life. My main priority now is to do the best we can to have his diabetes under control”, he added.
Given the family’s financial situation, Mohamad is grateful for the services that MSF provides for free. Even now, the family cannot always afford healthy food for Houssam. “If we were not getting the full package of care from the MSF clinic, we would have no choice but to buy the insulin, even if it means that we have to borrow money, but we will not be able to buy the strips of the glucometer for example. This would definitely affect our ability to provide him with healthy food. We can’t afford both the medications and healthy food. It’s either this or that”, he says.
Houssam is more comfortable with his disease today, he wishes to travel to study abroad and become a doctor. As part of the healthy lifestyle that the medical team recommends, Houssam was advised to exercise whenever he has Hyperglycaemia. Houssam’s favourite sports is football, he plays it with his brother in the surroundings of his tent in Aarsal.
Abdallah, Shatila Camp, South Beirut
Abdallah is an 8 year old suffering from both type I diabetes and epilepsy, which makes his case a challenging one. Today, Abdallah receives treatment at Médecins Sans Frontières’ clinic (MSF) in Shatila Camp, South Beirut, where he is provided with insulin pens.
Abdallah was diagnosed with diabetes when he was one and a half years old, while he was still living in Raqqa. “When we had to flee to Lebanon, I had one concern: What if I don’t have access to Abdallah’s medications? I was told by my relatives that healthcare is expensive in Lebanon” says his mother. “I packed a glucometer, some strips and insulin that cover up to 30 days, hoping to find an affordable healthcare provider in Lebanon. Then I learned that MSF provides free chronic disease treatment and follow up in its clinic in Shatila,” she adds.
Abdallah is very moody when it comes to his treatment: he used to bring the glucometer and the insulin pen himself to his mother to get his injections, now he refuses the treatment. He came to realise that he is the only one among his friends who is affected by a disease and needs regular treatment, and the only one who can’t eat whatever, whenever. MSF’s education team is supporting Abdallah and his mother to help him better adhere to his treatment and follow a healthy diet.
“Had the treatment not been available at MSF, I would have never been able to provide Abdallah with the medication he needs, and he would have not survived without them. Even though currently his situation is not 100% under control, it has been much worse before,” says his mother.
Sidra, Shatila Camp, South Beirut
She is adhering well to her treatment, but her main challenge is following a diet: it is hard for her to maintain a healthy one. “We are working through patient education on deepening the understanding of Sidra and her mother on how to maintain a healthy diet”, says Zeinab, MSF’s patient support and education counsellor (PSEC) in Shatila. “We are trying different approaches to make her adhere to a better diet. Lately, we promised her that if she shows improvement, she will be the one leading the upcoming peer-to-peer session. She was interested by the idea”, adds Zeinab.
MSF is implementing the insulin pen for type I diabetes patients under 15 years old in its clinic in Shatila camp, south Beirut to improve the adherence of children to treatment, the control of the disease, and reduce the risk of complications that could have impact for life. Almost 100 children are under insulin pen treatment, at MSF’s clinic in Shatila south Beirut. Sidra is one of them.
Moussa, Aarsal, Bekaa
Moussa, 6 years old, was diagnosed with type I diabetes, two years ago. The family had had no previous experience with the disease before his diagnosis.
“The disease was very new to me, I wasn’t sure if I can manage it well, so I used to go to the paediatrician every three days. I was confused and lacked confidence”, says Nada, Moussa’s mother. At that stage, and before knowing about Médecins Sans Frontières’ (MSF) clinic, Nada was visiting a private clinic and buying the insulin pen, glucometer and strips from the pharmacy. The minimum total amount she needed to buy these items was 50 U.S dollars per month. Nada was never able to completely cover the cost on a monthly basis and is still paying her debt to the pharmacist until today.
Moussa is now receiving treatment and follow-up at MSF’s clinic in Aarsal, and was recently enrolled in the continuous glucose monitoring programme. “When I was told about the continuous glucose monitoring (CGM) device, I was afraid. I had never heard of it before, and I was not very sure about its impact on my child’s health. But when the doctor and the counsellor explained to me what it was, and we tried it, I felt that the CGM made things easier for Moussa, and was much better than pricking”, says Nada.
The most challenging part in dealing with Moussa’s diabetes is the diet. It is very hard for him to stick to eating healthy food. He sees how all the children around him eat all types of snacks, and he wants to be like them…he wants to go to the store with other children and choose the snacks he desires.
Sometimes, once per week, or once every two weeks, the family can’t afford a healthy meal for Moussa. He ends up eating only potato or rice. When that happens, Nada increases the dose of insulin to balance the heavy meal Moussa ate. She has no other choice.
Khouloud, Aarsal, Bekaa
Khouloud, 13 years old, was diagnosed with diabetes type I. It was a big shock to her family, because they considered that she’s still too young to be sick. Khouloud is enrolled in the continuous glucose monitoring programme that MSF offers in its clinics in the Bekaa and North Lebanon for type I diabetes patients who are under the age of 15. “I manage my disease myself; I learned how to wear the continuous glucose monitoring sensor, scan it regularly, and check the results. I also learned how to do the insulin injection myself. I feel empowered, and definitely much more relieved that I’m using this device instead of pricking my fingers 3 to 4 times a day”, says Khouloud.
The education and awareness sessions given at the clinics have enriched Khouloud’s knowledge about diabetes: she now knows how to manage her disease, what food is healthy for her and what food isn’t, but most importantly, she was able to meet other diabetic children. She now knows she’s not alone because she’s not the only one suffering from this disease.
Bashar, Aarsal, Bekaa
“Bashar’s main challenge is that he neither eats snacks during school hours, nor takes his medications, which leads to him experiencing episodes of hypoglycaemia around mid-day”, says Nisrine, Médecins Sans Frontières’ (MSF) patient, education, counselling and support nurse in Aarsal clinic. She added, “Bashar doesn’t want to show to his friends and teachers at school that he is diabetic and he doesn’t want to receive special treatment from them because of his disease.”
Bashar, a 15-year-old patient with type I diabetes, has been coming to the MSF clinic in Aarsal for the past two years. Bashar is enrolled in the continuous glucose monitoring programme that MSF offers in its clinics in the Bekaa and North Lebanon for diabetes type I patients who are under the age of 15.
Bashar is a shy child who used to come to his appointment accompanied by his father. Four sessions later, he started coming to the clinic alone. Nisrine says: “He’s a great listener, and takes the staff’s advices very seriously, but it’s very challenging for child at his age to take full responsibility of the management of his disease on his own without receiving support. We’re trying our best to give him as much support as we can.”