Understanding neurofibromatosis type 1 beyond what is seen on the surface.
Neurofibromatosis Type 1 (NF1) is a lifelong genetic condition that can appear in ways people immediately see but rarely understand.
In the Philippines, it is considered rare, affecting an estimated 1 in 3,000 people based on available clinical data. Many families live with the condition quietly, often navigating it with limited awareness around them and uneven understanding in the wider public.
In many instances, the first signs of NF1 appear on the skin. These can include café-au-lait spots or growths along the nerves called neurofibromas. Because these changes are visible externally, they are often misread without medical context, sometimes mistaken for infection, allergy, or other skin conditions, including leprosy in some cases.
NF1 is not contagious
NF1 is a genetic condition that affects how cells grow along the nerves. It is not contagious and does not spread through touch, blood, or close contact. Its effects can involve different parts of the body over time, including the skin, eyes, bones, and brain.
According to Dr. Loudella Calotes-Castillo, pediatric neurologist at the Philippine General Hospital, much of the misunderstanding around NF1 comes from how it first presents visually. She shared this during a recent Agham Kapihan discussion on NF1, formally titled Agham Kapihan: A New Way Forward — Together Through Every Step.
“Many of the challenges come from everyday encounters. A glance, a comment, a moment of hesitation,” Castillo said. “What is visible on the skin can easily become the only thing people focus on.”
She added that while NF1 is a medical condition that requires long-term monitoring and care, many people living with it are able to continue daily life, including studying, working, and taking part in their communities.
People with NF1 need compassion, not disgust
People living with NF1 often need space to live normally, without stares, discomfort, or reactions of disgust. How others respond can shape daily experiences as much as the condition itself.
Medical care for NF1 is ongoing and depends on how the condition presents in each person. Management may include regular monitoring, pain control, surgery, or targeted therapies when appropriate.
Castillo notes that while there is no single cure, advances in treatment and coordinated care continue to improve how patients are supported over time.
What often defines the experience of NF1 is how it is met in everyday life. Understanding the condition means looking past what is visible at first glance and recognizing the person beyond the condition they live with.
