Update Information for May 25, 2010 (V 2.5)

An update was made to the “What is ECD?” page to provide more information about two additional treatments, sirolimus and anakinra (trade name Kineret).  Information about a sirolimus study can be found at “Pilot Study of Sirolimus with Prednisone as Treatment for ECD” under the “ECD Studies” menu selection.  The use of anakinra is not published, but at least one patient has found relief from bone pain with the use of this drug.

A new link was added to the published articles found on the “Technical Papers | Published Papers” page.  It is:

Chew HC, Lee CH, Cheah FK, Lim ST, Loo CM.
Cardiac Tumor and Renal Involvement in a Nonsmoker With Centrilobular Pulmonary Nodules
Chest. 2009 Apr;135(4):1102-6.

Broken links to other papers on this page were also repaired.

Entries were made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for recently published papers.  The additions are as follows:

1. An article published 2009 in ”Acta Ophthalmol”.  The article is entitled, “Azathioprine and prednisone combination treatment for adult periocular and orbital xanthogranulomatous disease” and includes an abstract.
2. An article published 2010 in “Hell J Nucl Med.”.  The article is entitled, “Erdheim-Chester’s disease as a differential diagnosis of ‘hot’ kidneys on bone scintigraph.” and includes an abstract.
3. An article published 2010 in “RSNA”.  The article is entitled, “Cerebral, Facial, and Orbital Involvement in Erdheim-Chester Disease: CT and MR Imaging Findings” and includes an abstract.
4. An article published 2010 in “Eur J Echocardiogr”.  The article is entitled, “Multimodality imaging showing complete cardiovascular involvement by Erdheim-Chester disease” and includes an abstract.
5. An article published 2010 in “Neuropathology”.  The article is entitled, “Non-Langerhans cell histiocytosis with isolated CNS involvement: An unusual variant of Erdheim-Chester disease” and includes an abstract.
6. An article published in 2010 in “Vnitr Lek”.  The article is entitled, “Central diabetes insipidus in adult patients–the first sign of Langerhans cell histiocytosis and Erdheim-Chester disease. Three case studies and literature review” and includes an abstract.
7. An article published in 2010 in “Med Clin (Barc)”.  The article is entitled, “Erdheim-Chester disease with bone lesion and retroperitoneal fibrosis” and does not include an abstract.

New ECD-knowledgeable doctors were added to the “Physicians” page.  The following were added:

1. A hematologist from the Czech Republic
2. A nuclear medicine doctor from Iran
3. An  ophthalmologist from the Netherlands
4. An  ophthalmologist from the Germany
5. A dermatopathologist from the USA
6. A radiologist from India
7. An orbital surgeon from the Netherlands

Additions were made to the contact information of some of the existing physicians listed to include the country where they are located.  This page was also annotated to show members of the ECD Global Alliance Medical Advisory Board.

A new menu item, “Donations” was added to the website.  A link was provided to this page from the home page as well.

An update was added to the “Case Locations” file to show the latest information regarding patients registered with the organization.

A new link was provided to http://en.wikipedia.org/wiki/Caregiver on the “Caregiver Info” page.

A new link was added to the “Resources | Links” page for a website called “Disabled Traveler” that provides information on businesses from around the world that specialize in disability travel.

A format change was made to the “ECD Patient Brochure” that is found on the “Resources | Brochures” page.

New chat summaries were added to the “Chat Room” page.