For patients living with rare and complex diseases, navigating the healthcare system can be an isolating and frustrating experience, especially when the condition is poorly understood by medical professionals. In our latest LGDA interview, we had the opportunity to speak with Maurizio De Angelis, a talented medical illustrator based in London, who was diagnosed with lymphangiomatosis as a child.
Maurizio’s story is one of perseverance and innovation. After years of unexplained symptoms and limited medical answers, he used his professional expertise in medical illustration to analyze his own scans and visually communicate what was happening inside his body. His 3D models and illustrations provided powerful tools to advocate for the care he needed and later, to help other patients do the same.
In this conversation, Maurizio shares what it was like growing up with a rare disease, the emotional and physical challenges he faced, and the role patient-driven advocacy can play in improving care for people with complex conditions. His message is one of resilience: “If you don’t take it seriously for yourself, it’s difficult that others will do it for you.”
We are grateful to Maurizio for generously sharing his experiences and insights. His story is a testament to the strength of the patient community and the creative ways patients and families are helping to push understanding forward.
Watch the full interview to hear more about Maurizio’s journey and how art became a powerful tool for advocacy in his story.
