The rare disease linked to HIV that is growing undiagnosed in Colombia Lipodystrophies, a group of rare genetic conditions characterized by abnormal fat distribution, are increasing in Colombia. Patients face an average diagnostic delay of 10 years, significantly impacting their quality of life and leading to severe metabolic complications. Early diagnosis and treatment are crucial for improving survival rates, which can range from 20-30 years without treatment to a normal lifespan with proper care.

• Lipodystrophy is a rare disease characterized by the loss or accumulation of body fat in unusual places.
• The prevalence of lipodystrophy in Colombia has increased significantly, from 35 cases per million in 2015 to over 400 per million in 2024.
• Patients in Colombia experience an average diagnostic delay of 10 years and an additional 5 years to receive treatment.
• Lipodystrophies can be genetic or acquired, with an acquired form linked to HIV treatment using antiretroviral drugs.
• Potential complications include diabetes, high triglycerides, fatty liver disease, and heart and kidney problems.
• Early diagnosis is critical and can significantly improve patient survival and quality of life.
• The Association of Endocrinology, Diabetes and Metabolism of Colombia (ACE) and Chiesi are creating the first national registry for congenital lipodystrophies. https://www.eluniversal.com.co/salud/2026/05/12/la-enfermedad-rara-que-se-relaciona-con-vih-y-crece-sin-diagnostico-en-colombia/