Erdheim-Chester disease (ECD) is a rare multisystem disorder of adulthood. It is characterized by excessive production and accumulation of histiocytes within multiple tissues and organs. Histiocytes are large phagocytic cells (macrophages) that normally play a role in responding to infection and injury. (A phagocytic cell is any "scavenger cell" that engulfs and destroys invading microorganisms or cellular debris.) In those with ECD, sites of involvement may include the long bones, skin, tissues behind the eyeballs, lungs, brain, pituitary gland, and/or additional tissues and organs. Associated symptoms and findings and disease course depend on the specific location and extent of such involvement. The specific underlying cause of ECD is unknown.
Diagnosed in 1-200 people in the world. No standard treatment.
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Be of good courage, and He shall strengthen your heart, all you who hope in the LORD. Psalm 31:24 This a blog for Erdheim Chester Disease patients, friends, and family's. It's purpose is to provide a forum for ECD patients to come together to share information with friends, family, & other ECD patients. This blog allows one author per patient. Contact blog admin Doug M to become an author on this blog.
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About Me
- Doug M
- Wonderful Wife, 3 great step children. Diag following 10 years of mis diag or none, Nov 07' ECD.
1 comment:
Doug,
Thank you for documenting your story. It cannot be easy. By sharing your thoughts, feelings and experiences you may help others who are battling ECD.
My husband fought ECD for years without the benefit of a diagnosis. We did not know the root cause of his many health issues until it was too late. It is such an unknown disease I believe it is extremely difficult to get a diagnosis.
The fact you received a diagnosis early is a blessing. I pray your treatments will bring great results.
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