Innovative Hematology, Inc. reposted this
🔬 Dr. Amy Shapiro on PLGD-1: from diagnosis to therapy, why timing and teamwork are key 🗣️ “I’ve spoken to patients who waited decades for a diagnosis of PLGD-1. We must shorten the journey from symptoms to diagnosis — because early treatment means hope.” — Dr. Amy Shapiro, MD, Medical Director & CEO, Indiana Hemophilia and Thrombosis Center, Indianapolis Dr. Shapiro, a global expert in plasminogen deficiency type 1, shared her reflections on how the symptoms of this condition can mimic other common diseases, often leading patients to years of misdiagnoses and untreated progression. Raising awareness among both general practitioners and specialists is crucial, she explained, especially given how the disorder can manifest in the eyes, mouth, lungs, kidneys, skin, and beyond. That’s why coordinated, multidisciplinary care makes the difference, as does timely access to therapy. Today, replacement therapy has a life-changing impact. But much more must be done to empower patients and families with the knowledge they need to advocate for timely, appropriate care. 👇 Listen her full interview. #ISTH2025 #OneKedrion #RareDiseases #WomenInScience #PlasminogenDeficiency #PatientCare #VoicesFromISTH