Update Information for September 30, 2011 (V 2.21)

Three published news articles about Erdheim-Chester Disease were added to the “Patient-to-Patient” page.  They are:

1. A Rare Disease Leaves a Man Feeling Blessed – An inspirational first person account from someone who is living with ECD.
2. Erdheim-Chester Patient Gets Lungs – A short article appeared in the Japanese news media in September 2011.  It states that the first lung transplant to an Erdheim-Chester Disease patient occured at Okayama University Hospital in Japan.
3. Angel Hearts Launches in Seymour – An article about a man, with Erdheim-Chester Disease, who with his wife has started a nonprofit orgnization called, ‘Angel Hearts’.  The organization is dedicated to helping families who are in need because of medical conditions, including illness and injury.

The table of known ECD studies on the “ECD Studies” page was updated to include a link that better describes the ECD research of Drs. McClain and Allen at Texas Children’s Hospital in Houston, Texas.  Please see the “ECD Studies” page to see a list of all studies requesting patient involvement.

A slight change was made to the “What is ECD?” page to indicate the histiocytes that accumulate in ECD lesions actually infiltrate the organs.

The Case Locations as found on the “Patient-to-Patient” and “ECD Global Alliance” pages, was updated.

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

New ECD-knowledgeable physicians’ contact information was added to the  “Physicians” page as follows:

Timothy Craig Allen, MD, JD
Professor of Pathology
Chair, Department of Pathology
The University of Texas Health Science Center at Tyler
11937 U.S. Highway 271
Tyler, Texas 75708-3154  USA
Telephone:  903.877.7883
Fax:  903.877.7964
e-mail:  Timothy.Allen@uthct.edu

Alex Alfieri, MD
Oberarzt
Klinik und Poliklinik für Neurochirurgie
Martin-Luther Universität Halle-Wittenberg
Ernst-Grube Str. 40
D-06097 Halle (Saale)
Germany
alex.alfieri@medizin.uni-halle.de
alex.alfieri@uk-halle.de

Roberto Gazzeri, MD
Department of Neurosurgery
San Giovanni Addolorata Hospital
Rome, ITALY
e-mail:  robertogazzeri@gmail.com
Telephone:  +39 3386686149
www.chirurgiaspinale.it

Information for the following physicians was removed  from the “Physicians” page as the contact information was out of date:

Huck Chin Chew, MD
Department of Respiratory and Critical Care Medicine
Singapore General Hospital
Outram Road
SINGAPORE 169608
Telephone: 65 9856 0027
Fax: 65 6462 4178
e-mail: chinnjing@pacific.net.sg

Emoke Šteňová, MD
1st Department of Internal Medicine
Comenius University in Bratislava
Bratislava, SLOVAKIA
e-mail:  stenova@faneba.sk

Updates were made to links on the ‘Resources‘ page.  The Argentina Histiocytosis Association  link and the email for the Brazil organization as were corrected.

The ‘Blogs and eGroups‘ page was modified to add a new facebook group called “Defying a Frightening Diagnosis” that was started by an ECD patient and is meant be a place of support for anyone with a frightening diagnosis.

A typo was corrected on the questions and answers provided about the NIH study, “Clinical and Basic Investigations into Erdheim-Chester Disease” as found on the “ECD Studies” page.

New 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 in the journal, Pediatr Radiol.  The article is entitled, “Erdheim-Chester disease with multisystem involvement in a 4-year-old” and includes an abstract.
2. An article published in the journal, Arthritis Rheum.  The article is entitled, “Treatment of pediatric erdheim-chester disease with interleukin-1 targeting drugs” and does not include an abstract.
3. An article published in the journal, Annales de Dermatologie et de Vénéréologie.  The article is entitled, “Associated Langerhans cell histiocytosis and Erdheim-Chester disease” and includes an abstract.