News for July 5^th, 2009 (V 1.1.13)

The latest ECD Newsletter, Issue 3, June 2009, was added to the News/Update page.

A group of internists from Milano, Italy with experience treating multiple patients with ECD was added to the Physicians page.

A hematologist from Israel was added to the Physicians page.

A statement was added to the ‘What is ECD?’ page about dental issues that can arise for ECD patients.  It states, “ECD has been reported in the medical literature to cause degeneration of bone tissue, including those of the upper and/or lower jaw.  Evidence of ECD has also been reported in the tissue that surrounds and supports the teeth.  In addition, some patients have found they experience difficulty with tooth enamel ‘chipping off’ or tooth ‘erosion’.  Dental examinations are needed to identify any of these issues.”

An update was made to the ‘What is ECD?” page about a treatment for ECD using the drug, imatinib. An article published on this subject in 2008 was found and summarized.

A link was added to a new blog, ‘Without a Manual’ on the ‘Patient-to-Patient’ page.  A link was reestablished to an existing blog, ‘ECDProject’.

An update was made to the Technical Papers | Published Papers.  The following papers were added:

• “Imatinib mesylate for platelet-derived growth factor receptor-beta–positive Erdheim-Chester histiocytosis”, published in 2008
• “Erdheim-Chester disease (comment)”, published in 2005.
• “Erdheim-Chester disease: case report with multisystemic manifestations including testes, thyroid, and lymph nodes, and a review of literature”, published in 2004.
• “Erdheim-Chester disease in Brazil”, published in 2002.
• “Erdheim-Chester disease and slowly progressive cerebellar dysfunction”, published in 1998.

The ‘Case Locations’ was updated on the Patient to Patient page.  This reflects new patients who have joined the group since the last update.

An update was made to the ‘ECD Global Alliance’ page to show the increase in number of ECD patients represented by the ECD Global Alliance.  A new entry was made to this page to explain the group’s current leadership.

New chat summaries were added to the Chat Room page.

A new entry was made to the ‘Abstracts of Published Papers’ as listed under the ‘Technical Papers’ selection for a paper published in April 2008 in the journal, Tunis Med.  The article is entitled, “Erdheim–Chester disease multivisceral form with favourable outcome” and is without an abstract.