The Manila Times
HEALTH experts urged a stronger awareness campaign on Friday for Neurofibromatosis Type 1 (NF1), a rare disease that causes tumors to grow along the nerves. The call was made during the observance of World Neurofibromatosis Day. ”Awareness is important because when families, schools and communities understand the condition better, children are given a greater opportunity to thrive,” Dr. Amparo Itto Agrava, pediatric neurologist and neurosonologist said during a briefing led by AstraZeneca Philippines. NF1 is a rare genetic condition that affects 1 in 3,000 people worldwide. It causes tumors to grow along the nerves and can lead to complications involving the skin, bones, eyes and brain, with symptoms such as skin growths and noticeable markings. Health experts explained that the health condition varies from patient to patient, noting that no two patients present the same way. This, they noted, is the primary reason why many patients in the country are left undiagnosed or misdiagnosed. While the disease is not contagious, Agrava said greater understanding can help patients in their journey to recovery — especially from their families. ”Support starts with the family. The way parents accept and support their child influences how that child sees themselves,” said Agrava. Dr. Loudella Castillo of the Philippine General Hospital noted that most patients consult multiple specialists over the course of several years before receiving a confirmed diagnosis — delaying not just treatment but access to the right support systems and care. ”As health care professionals, one of our responsibilities is helping patients reach the right doctors and support systems. When we address not only the medical needs of patients but also their emotional and psychosocial needs, families become more empowered to participate actively in care and decision-making,” Castillo noted. AstraZeneca Philippines said a new therapeutic option was recently introduced in the country, adding a Filipino patient recently received an approved targeted therapy. Experts and advocates called on policymakers to strengthen and invest in rare disease centers and create clearer referral pathways to serve people with conditions like NF1. ”At AstraZeneca, we believe that every patient living with rare diseases deserves access to innovation, dignity and a health care system that sees them,” said Dr. Cyril Tolosa, medical affairs director for biopharmaceuticals and rare disease of AstraZeneca Philippines.
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