Sylvie Maalouf

Since the beginning, I decided I would be open and transparent about my diabetes. This has allowed me to expand awareness about the subject, to initiate conversations and get the right help when I need it.

How long have you been living with diabetes?

I have been living with type 1 diabetes for 14 years.

How were you diagnosed?

My diagnosis was not your typical type 1 diagnosis. I was 24 years old. I had finished my master's degree in the USA and had spent the summer in Geneva as part of a fellowship programme with Duke University and the USA. I was engaged and planning for my wedding the following year.

I had been experiencing symptoms of diabetes for months, without linking them together. I had extreme fatigue, which doctors and friends associated to the life of a graduate student with a full-time job. I developed blurred vision which led me to wear glasses to drive and to be able to read the board during university classes. I was always thirsty, which I attributed to environmental factors and dry indoor air quality. I had constant headaches, which could have been linked to stress. I went to the bathroom constantly, which at the time was linked to a recurrent urinary infection. I would get leg cramps, which many attributed to lack of potassium. I was losing weight, but doesn't every young woman who is working while studying and also trying to a plan a wedding lose weight? It is almost funny when I think back to how little I knew about diabetes, and how it never crossed my mind that all my symptoms were related.

It wasn't until 8 months later, when my symptoms had worsened, that I decided to go to a lab for a comprehensive blood check-up. When they asked me for a reason I said it was to ensure that everything was ok before getting married. The results showed what I had been feeling for a long time. I wasn't stressed, anxious, tired, or not eating right... I had diabetes!

Did your diagnosis come as a surprise to you?

My initial diagnosis was a big surprise. I was shocked and confused when I saw my fasting blood glucose was 460 and HbA1c 15%. I started researching and realised that I would have to change my life, my nutrition habits and that I would be bound to insulin injections and continuous glucose testing for the rest of my life.

How did your diagnosis affect your family or loved ones?

My family and friends were affected by my diagnosis. They were sad and shocked. My fiance (now husband of 13 years) was scared, but supportive. He asked me how I felt, what I needed and never once tried to tell me what to do or not to do, or what to eat or not to eat. He watched me and asked me how I was feeling at different times, so that he could learn the signs of low or high blood glucose. That was the best kind of support I could have dreamed for. My friends were also open to listen and attentive to my needs. My immediate family had a bit of a harder time coming to terms with my diagnosis, and now, as a mother myself I can understand why. But they soon became supportive and have been ever since.

What are the most important things that have supported your diabetes care?

Access to a great team of professionals, from endocrinologists, to internal medicine, to nutritionists, to psychologists. I have been blessed to have access to all the required specialists I could need, who I affectionately call my "dream team".

Having founded a non-profit focused on diabetes patient support I have had the privilege to be able to meet and help and learn from many others living with type 1 diabetes. The importance of building a T1D community cannot be underestimated. Humans need interaction and support, and they need to be inspired by seeing others like them.

Being vocal and open about my condition. Since the first days of diagnosis I decided I would be open and transparent about my diabetes. This has allowed me to expand awareness about the subject, to initiate conversations and get the right help when I need it. However, I could not have achieved this without the unwavering support of my family and friends, who accepted my openness and willingness to share.

What has living with diabetes taught you the most?

Living with diabetes has taught me to listen to my body. It has forced me to take the time to be in tune with my body and my needs. It has shown me my limits and has forced me to prioritize my health. Being vocal and spreading awareness about diabetes through my own life experience has been one of the most rewarding parts. I have met some amazing people and hope to continue to meet and help many others.

What has been your lowest point with diabetes?

Every day living with diabetes has a low point, but one of my lowest was during the beginning of the COVID-19 pandemic, when we were sent home and had to be sedentary. The fear and stress of the unknown, together with the inactivity of being home all day and the lack of social contact caused my cortisol levels to increase, eating habits to change and my metabolism to drop significantly. The fear of leaving the house also meant that I didn't do my routine check ups in time. The fear of being at high risk due to living with diabetes meant that I was quarantined and isolated longer. I realized the importance of daily activity. How a simple walk each day can do wonders to my metabolism and sugar levels, and how seeing friends and family was not only a requirement for our mental health, but severely manifested itself on my physical health as well.

Have you ever experienced issues accessing diabetes medicines, supplies and care?

While living in the USA. medical care as someone with pre-existing condition was quite expensive and sometimes the cost of medications was very steep. Insurance coverage has always been an issue. I struggle with the fact that testing materials are considered as accessories, when they are in fact a key component of diabetes management, especially for those of us who are insulin-dependent. Expanded routine annual testing as a person with diabetes should also be covered by insurance without question. Finally, many countries have high prices for insulin, and it should be lowered to allow access for all in need.

What would you like to see change in diabetes over the next 100 years?

We need a cure. A life where we inject our own insulin and are at the whim of high or low blood glucose is not the solution. Every day is a battle against terrifying lows or debilitating highs. We need a cure.

What do you think needs to change to improve the lives of people living with diabetes in your country?

Accessible and enhanced technological advancements are necessary. CGMs are great but still quite expensive for most. The cost of insulin must be accessible, and testing supplies covered by insurance. We also need better pre-screening of diabetes.

What does the centenary of insulin mean to you?

The centenary of insulin is an incredible milestone and something to be celebrated, as people who lived with diabetes (especially type 1 diabetes) before the discovery did not have a chance to have the kind of life we have. It is because of insulin that I am able to live today.

However, the centenary is also a wakeup call. 100 years on, and we are still using the same treatment. And, while the technology used to administer it may have gotten better, it is hard to imagine that other advancements have not been made. We are still so far from a real cure, or from preventing diabetes fully. May this centenary be the start of renewed interested and investment in diabetes research!

The Insulin at 100 campaign is supported by