The following is shared by Anna Nicolaou:
For individuals living with hyperinsulinism (HI), nutrition is not optional, but a medical necessity; a lifeline and access to proper nutritional guidance can mean the difference between stability and crisis. The right foods, the right timing, and the right support can prevent dangerous hypoglycaemic episodes and protect long-term health. While good nutrition benefits everyone, it holds a unique role for those living with HI. For individuals with HI, nutrition works by stabilising glucose levels, reducing the frequency and severity of hypoglycaemia, supporting healthy development and growth, and empowering families to manage the condition safely.
Accessing nutrition guidance is not always granted, as many families must navigate complex dietary requirements with limited access to resources, financial barriers, and inconsistent medical advice. While no two cases are the same, I want to share with you several core principles that guide my nutritional care in HI, such as frequently scheduled meals/snacks. Regular intake prevents long fasting periods, which can trigger hypoglycaemia. Another principle is emphasis on complex carbohydrates; whole grains, vegetables, and legumes release glucose slowly, helping maintain stable blood sugar levels. The final principle is that adjustments of nutritional requirements evolve with age, activity level, and treatment response and should be monitored through on-going glucose monitoring. I think all HI families should have access to dietitians who can create a tailored diet that takes into account the individual’s genetic form of hyperinsulinism (i.e. protein sensitive). I think that people with hyperinsulinism need more than just nutrition principles. They need nutrition guidelines to safeguard their health.
For me, nutrition is about listening to what my body genuinely needs. Because I live with hypoglycaemia, I am particularly sensitive to protein. If I consume too much of it, it can throw my blood sugar off and leave me feeling unwell. As a result, I build my meals so that fibre-rich foods and carbohydrates form the foundation, while protein remains the smallest portion on my plate. This balance helps me maintain stable blood sugar and supports my overall well-being, while still allowing me to include the amount of protein that works best for my body.
Nutrition needs are not fixed; they are influenced by age, health conditions, and activity levels. Since nutritional needs and dietary habits evolve, it is essential that participants of the HI Global Registry update the Diet and Feeding survey on a regular schedule. Doing so ensures that your HIGR data contains the most up-to-date information about your nutrition, and diet. When everyone in the HI community participates, the combined data can provide better insights into the nutritional and dietary needs of the community. Research that utilizes HI Global Registry data ultimately translates into better care and support that truly aligns with an individual’s current needs. Keeping this data current is a simple step that has a meaningful impact on the quality of care.
Nutrition month is a reminder that food is powerful, but so is community, awareness, and advocacy. Compassionate care, therefore, is also ensuring that schools understand the importance of regular meals and monitoring. Additionally, it is about supporting parents who must meticulously plan meals around the clock. Further, it is about encouraging Centers of Excellence and other centres of care to provide accessible nutrition-focused counselling and guidance. Additionally, it’s about creating community spaces where patients and their families can share their lived experiences. By sharing stories, we can help reduce stigma and increase awareness.
This month, as a community, let us raise our voices and strengthen the HI Global Registry (HIGR) together—because each individual who shares their experience helps build a world where safe, equitable, and essential nutrition for those living with hyperinsulinism becomes a reality.
