Managing Diabetes Insipidus (AVP-D): Practical Guidance from a Patient-Expert
Автор: ECD Global Alliance
Загружено: 2025-09-10
Просмотров: 241
Managing Diabetes Insipidus (DI), now called Arginine Vasopressin Deficiency (AVP-D), is critical for patients, families, and clinicians — especially those with Erdheim-Chester Disease (ECD) or Langerhans Cell Histiocytosis (LCH), where AVP-D is more common.
In this session, a patient-expert explains:
Why the condition is now called AVP-D and why the name change matters
Core symptoms: constant thirst, frequent urination, nocturia, and reliance on cold fluids
How copeptin-based tests improve diagnosis accuracy over the outdated water deprivation test
Practical guidance for safe desmopressin (DDAVP) use, including “breakthrough” to avoid hyponatremia
Advocacy tools: 24-hour urine tracking, understanding sodium targets, and carrying hospital safety protocols
The importance of mindset, self-advocacy, and community support in long-term management
This presentation is part of the playlist: Managing Diabetes Insipidus (DI) [Arginine Vasopressin Deficiency (AVP-D)].
Learn more at: https://erdheim-chester.org
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