Erdheim-Chester Disease (ECD): What is it and what are the signs and symptoms?

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Aug 6, 2019 | Justin McClanahan, Moderator | @JustinMcClanahan

Erdheim-Chester disease (ECD) is a very rare disorder in which histiocytes, cells that help fight infection, multiply and infiltrate bone marrow and then spread throughout the body.

Symptoms can include:

• Changes in gait
• Changes in sensory ability
• Sleep disturbances
• Diabetes insipidus, a disorder characterized by intense thirst and by the excretion of large amounts of urine
• Vision problems
• Labored breathing or shortness of breath
• Heart failure
• Kidney damage

Given the wide range of symptoms and its rarity, the disease is easily misdiagnosed. Learn how patients and providers can better recognize warning signs for ECD from Ronald, Go, M.D., and Gaurav Goyal, M.D..

Have you or a loved one been diagnosed with ECD or another type of rare blood disease? Meet other Connect members talking about rare diagnoses in the Blood Cancers & Disorders group where you find conversations like "Help with histiocytes."

Also, check out the following article:

The Mayo Clinic Histiocytosis Working Group Consensus Statement for the Diagnosis and Evaluation of Adult Patients With Histiocytic Neoplasms: Erdheim-Chester Disease, Langerhans Cell Histiocytosis, and Rosai-Dorfman Disease.