MHAUS Newsletter, February 2008
In this issue:

MHAUS Sponsors MH-Associates Diseases Symposium

MHAUS is pleased to sponsor a one day symposium, “Malignant Hyperthermia-Associated Diseases: Who Needs a Non-Triggering Technique,” on Thursday, April 3, during the Society for Pediatric Anesthesiology (SPA) meeting in San Diego, California.

 

The symposium’s program director is Dr. Ronald S. Litman of The Children’s Hospital of Philadelphia.  Guest speakers and topics include: Amanda K. Brown, MD, and Harshad Gurnaney, MD, speaking on “Dystrophinopathies;” Thierry Girard, MD, speaking on “Congenital Myopathies;” Jerome Parness, MD, PhD, speaking on “Myotonias;” John Capacchione, MD, speaking on “Heat and Exercise-Related Rhabdomyolysis;” Jan Benca, MD, speaking on “Miscellaneous Disorders;” Thomas Crawford, MD, speaking on “Differential Diagnosis of the Hypotonic Infant Presenting for Muscle Biopsy;” and Barbara Brandom, MD, speaking on “Anesthetic Management of the Hypotonic Infant Presenting for Muscle Biopsy.”

 

Audience discussion will follow along with a welcome reception.  A continental breakfast will be provided prior to the start.  There is no charge for this symposium, but special registration is required.  To learn more about the SPA meeting and to register for the symposium visit http://www.pedsanesthesia.org/meetings/2008winter/spa08_program.pdf

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Speaker's Bureau Info Area on MHAUS Website

To help with the recognition and treatment of malignant hyperthermia (MH), MHAUS offers, through our Speakers Bureau, information on MH crisis management, MH testing options, a mock drill of an MH episode, and question and answer sessions right at your facility.

 

Although MH is not a well-known disorder, any medical professional who has ever dealt with a case of MH will understand the need for the MH educational materials we provide.  For a medical professional to see a patient’s physiology deteriorate over minutes due to MH must be one of the most frightening and potentially devastating events experienced in his/her career.

 

MH experts can come to your facility or meeting and speak to your staff about malignant hyperthermia. MH experts are ready to offer insight and suggestions on the treatment regimen for MH should you find yourself facing a possible MH event.  MHAUS offers this service as an important tool to help you keep your patients safe and well.

 

To find out more information about this service, contact Doreen at MHAUS either by phone, 607-674-7901 or by email at doreen@mhaus.org.

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MHAUS’ MH Experts Say Medical Journal Article Misleading

Just because you can't explain what is going on, and the syndrome has some aspects of malignant hyperthermia (MH) associated with it, it doesn’t mean that it is MH.  That’s the issue MHAUS Hotline Consultants and other MH experts had with an article appearing in the “Journal of Clinical Anesthesia.”

 

A letter to the editor was submitted by Jerome Parness, MD, PhD, as lead author, with co-authors including Andrew Herlich, DMD, MD, FAAP, Klaus Torp, MD, Marilyn Larach, MD, FAAP, and Jordan Miller, MD.

 

“We question the declarative use of the term malignant hyperthermia in the title, rather than the less certain, and more appropriate, term malignant hyperthermia-like syndrome…” the letter read.

 

The letter continued by stating the only definitive tests for MH are a genetic test or a live muscle biopsy specimen subjected to a caffeine-halothane contracture test.  Unfortunately, the patient died and no post-mortem material was reported to have been sent for genetic testing.  The letter also stated that other factors could have contributed to this diabetic patient’s symptom complex.

 

The authors hope this letter will be a step in reversing the process of labeling an unexplained syndrome MH that does not adhere to the strict MH definition.  Without doing so, any unexplained syndrome with similar characteristics of MH could be mislabeled as such.

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Start Making Plans Now for the Annual European MH Group Meeting

The 27th Annual Meeting of the European Malignant Hyperthermia Group is set for May 28-30 in Lund, Sweden.  Come and learn about the latest developments in the area of malignant hyperthermia and enjoy the beauty of Lund city.  The meeting is just prior to the Euroanaesthesia 2008 meeting in Copenhagen - across the bridge from Sweden.  Please note that this meeting will celebrate the 25-year anniversary of the European Malignant Hyperthermia Group.

For general information, visit http://www.emhg.org/index.php?option=com_content&task=view&id=114&Itemid=103

For program information, visit http://www.emhg.org/index.php?option=com_content&task=view&id=120&Itemid=100

For abstract information, visit http://www.emhg.org/index.php?option=com_content&task=view&id=121&Itemid=99

For registration, visit http://www.emhg.org/index.php?option=com_remository&Itemid=94&func=fileinfo&id=27

For Lund venues, visit http://www.emhg.org/index.php?option=com_content&task=view&id=122&Itemid=105

For how to get there, visit http://www.emhg.org/index.php?option=com_content&task=view&id=123&Itemid=104

Also, the European Malignant Hyperthermia Group (EMHG) is pleased to announce that, after starting in 2007, the annual EMHG prize will be again awarded in 2008.  The deadline is March 1st 2008!  To learn more, visit http://www.emhg.org/index.php?option=com_content&task=view&id=119&Itemid=93

 

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Praise from a Protective Mother

MHAUS recently received a letter from a mother who has a 7-year-old son with Duchenne MD.  She was debating whether her son should have minor urological surgery and visited the MHAUS website for more information.

 

“Your site has been incredibly informative and when you are a lay-person, that makes all the difference,” the letter read. “I feel that I have a really strong grasp of the risks and possibilities related to MH that I didn't have before. Now we can make this difficult decision, in consult with our doctors and anesthesiologists, with a bit more confidence. Thank you for reassuring this protective mother!”

 

From January thru December 2007 the MHAUS website received 226,935 visits and 12,723 podcast hits.  Separately, there were 650 calls to the MH Hotline.  The MHAUS website has a wealth of information for the patient and the professional.

 

MHAUS is the only patient organization in North and South America that addresses issues related directly or indirectly to MH.  If you haven’t visited the recently redesigned MHAUS website, check us out at www.mhaus.org.

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