'Syrian refugees living with diabetes are not as lucky as I was. Some are phenomenally poorly managed for their disease. Some received little education about diabetes back in Syria; others are well-educated about it, but have gone days without insulin or other medications.'
What is diabetes?
There are two main types of diabetes. Type 1 happens because insulin production stops entirely, and makes up around 10 per cent of all cases. Type 2 is caused by insufficient insulin.
People living with diabetes must keep track of everything that affects their blood glucose levels. This includes food, exercise, sleep, stress, illnesses and medication, such as insulin or pills.
Over one million Syrians have sought to escape a brutal armed conflict in their home country by fleeing to Lebanon, often becoming impoverished in the process and living in crowded, makeshift shelters. Add trying to survive with diabetes to those circumstances, and the situation for many becomes tragic. James Elliott is a Canadian researcher who recently returned from Lebanon, where he worked with diabetes patients among the Syrian refugee population.
By James Elliott
Médecins Sans Frontières/Doctors Without Borders (MSF) treats around 2,000 patients with diabetes in Lebanon. I am a researcher from Canada studying what these patients know about their disease, what challenges they face, and what MSF can do to better help them. I also have a personal connection to my work, having lived with diabetes myself since childhood.
At the age of 12, I was diagnosed with Type 1 diabetes. I started to show all of the hallmark symptoms: extreme thirst, frequent urination, exhaustion and loss of appetite. Then my breathing began to shut down, which led to a visit to the emergency room — and finally my diagnosis of diabetes.
Shortly after, I was transferred to a major regional hospital. There I received a solid week of classes on how to live with diabetes. An endocrinologist explained the details of the disease; a diet plan was formulated by a dietician; and insulin injections and self-measurement of blood glucose were demonstrated by a diabetes educator nurse. This foundation has enabled me to keep my blood glucose under control (mostly), which has let me live what I consider a very fulfilling and healthy life.
Poor access to medication, education and healthy diet
In present-day Lebanon, Syrian refugees living with diabetes are not as lucky as I was growing up in Canada. Some are phenomenally poorly managed for their disease. Some received little education about diabetes back in Syria; others are well-educated about it, but have gone days without insulin or other medications. Some patients used to be able to measure their blood glucose with a glucometer, but have now run out of money for test strips and have had to stop. Practically all had much better access to healthy food before the crisis.
Ideally, people with diabetes are given what is called self-management education and support. Essentially, the patient is trained on how to survive with diabetes and given help from time to time to fine-tune his or her routine. Research has shown this helps keep blood glucose levels closer to normal, improving the chance of a long life free of complications. Trying to provide diabetes self-management education and support for refugees from the Syrian conflict, however, is quite challenging — to significantly understate things.
Take for example diet. Healthy food is a cornerstone of living well with diabetes. Eating regular portions at regular times and limiting starchy carbohydrate-dense foods (breads, potatoes, rice) helps avoid blood glucose “spikes,” and gives better blood glucose control.
Sadly, many of the Syrians living with diabetes who MSF works with in Lebanon have almost no control of their diet. Fresh meat, fruit and vegetables is a luxury they rarely, if ever, enjoy. One patient asked me how he could eat healthily when the only food he could afford was the bread, potatoes and rice he received from the charity of a neighbour.
Greater risks of complications
One of our patients, Nadia (not her real name), was receiving insulin and needles for her Type 1 diabetes at one of MSF’s Bekaa Valley clinics. I speak very little Arabic and she spoke very little English, but we managed to talk by typing messages using a phone app.
Nadia is the same age as me, and had also been diagnosed with diabetes at the age of 12. However, there are many differences between us. While I can test my blood glucose whenever I want by adjusting my insulin doses more precisely, she has to ration a few tests per week. While I have access to healthy food and a relatively stress-free life, she has to manage her diabetes while reusing needles and looking after her husband, two kids and extended family. And although when I met her she did not have any complications, blood tests confirmed that her blood glucose had become a lot worse since she had fled Syria.
This can have extreme consequences. If a near-normal blood glucose level cannot be maintained, the risks of diabetes complications, and even death, sky-rocket. Some patients suffer from diabetes-related blindness. Others may die from kidney failure. I saw a 15–year-old girl with a diabetic foot wound – a complication that leads to amputation and is normally found in older adults who have had years of poor blood glucose control.
Over the coming year, MSF will be attempting to structure a diabetes education program that makes sense in the conditions under which Syrian refugees in Lebanon currently live. Right now we are assessing the needs of patients through surveys and focus groups. Group classes that explain to patients what diabetes is, how patients can manage it and what complications to be on guard for have started. Soon, the project will hire councillors who will educate patients about diseases such as diabetes. However there is still a lot more to do.