MHAUS Newsletter, February 2009
In this issue:

EMHG Annual Meeting Scheduled for Australia, April 14-16

The European Malignant Hyperthermia Group 2009 Annual Meeting is scheduled for Victoria, Australia, April 14-16, 2009. The meeting will aim to showcase recent MH research in Australia and New Zealand and to identify potential areas of collaboration between MH centers around the world.

 

Guest speakers include Drs. Michael Denborough and Jim Villiers, along with local speakers Mark Davis, PhD, Margaret Perry, FANZCA, Kathryn Stowell, PhD, Andrew Bjorksten, PhD, Robyn Gillies, FANZCA, Neil Pollock, FANZCA, and Neil Street, FANZCA.

 

For registration and accommodation information, visit the EMHG website at www.emhg.org.

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“How Do I Counsel My Patients” Slide Show Now Available

A new slide show is now available on the MHAUS website to help guide medical professionals in discussing with their patients whether they should be referred for additional diagnostic testing relating to MH-susceptibility (MHS).

 

The 46-page slide show was completed under the direction of MHAUS Scientific Officer Dr. Sharon Dirksen, with input from MHAUS Hotline Consultants, Professional Advisory Committee members, and genetic counselors.  The streamlined, easy-to-read guideline provides a quick reference for most any question related to MH-susceptibility testing.

 

A link to the slide show is available on both the medical professional and patient section of the MHAUS website.  To view the slide show now, visit http://medical.mhaus.org/PubData/PDFs/dx_testing_options.pdf

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Where To Find Information For Genetic Disorders

MH is inherited in an autosomal dominant pattern.  This means that children, parents and siblings of an MH susceptible have a 50% chance of inheriting MH susceptibility.  Aunts and uncles of the MH susceptible and grandchildren have a 25% chance.  More distant relatives have a lesser chance.

 

The molecular genetic testing section of the MHAUS website is a good place to learn about the genetics of MH.  Visit http://patients.mhaus.org/index.cfm/fuseaction/Content.Display/PagePK/MolecularGeneticsFAQ.cfm

 

MH has been linked to a rare disorder of muscle called Central Core Disease and also to King Denborough Syndrome, a rarer muscle syndrome.  Additionally, patients with certain forms of muscular dystrophy may develop life-threatening disturbances and muscle destruction on exposure to the triggering agents for MH.

 

Another good source of information for genetic disorders is the Federal government’s Genetic Home Reference, a guide to understanding genetic disorders.  Visit the website at http://ghr.nlm.nih.gov/.  To search the website for specific information related MH, visit http://ghr.nlm.nih.gov/search?query=malignant+hyperthermia

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Annual Rare Diseases Day, February 28th

To raise awareness of rare diseases and the need for safe, effective treatments, people around the world will join together to observe the 2nd Annual Rare Disease Day on the last day of February (Feb. 28, 2009). The National Organization of Rare Diseases (NORD) is coordinating this project in the U.S., and is inviting all patient organizations, caregivers, researchers, and companies developing orphan products to join in this observance. The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.

The 1st Rare Disease Day was organized in Europe last year by EURORDIS, the European Rare Disease Organization. It was very successful, with many political leaders and members of royal families helping to draw attention to the activities. This year is the first time for Rare Disease Day to be observed in the U.S. The hope is that this will become an annual global event on the last day of February.

 

MH is listed in the NORD database and considered a rare disease.  To learn more about this event, visit http://www.rarediseases.org/rare_disease_day/rare_disease_day_info

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Mrs. Dale Micalizzi Joins MHAUS Board Of Directors

Dale Micalizzi has agreed to join the MHAUS Board of Directors.  Mrs. Micalizzi has been a friend of MHAUS for several years, following the death of her son in what was supposed to be a straightforward anesthesia and surgery.  Although the death was not linked to MH, she has become very involved in issues related to patient safety and compassionate treatment of patients and their families, particularly after an unexpected death.

 

“She has spoken at many national meetings on issues related to patient safety and medical errors and will bring to our board insights from other organizations that focus on such issues,” said MHAUS President Henry Rosenberg.

 

Mrs. Micalizzi has developed a few websites related to these issues.  To learn more, visit:

http://www.taskforce.org:80/justinhope.asp

http://justinhope.tumblr.com:80/

http://www.facebook.com:80/group.php?gid=14753776554

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MHAUS Guidelines For Managing MH And Pregnancy

The question of the best anesthetic management for labor and delivery of a parturient who is not MH susceptible, but whose partner is believed to be MH susceptible, is largely theoretic since there are no human or animal clinical studies related to this situation.  There are also no cases reported of a fetus of such parents developing a peripartum MH crisis.

 

Nevertheless, since this situation does occur with some frequency, MHAUS has developed a suggested guideline for management of the pregnant patient not believed to be at risk for MH, but whose partner is susceptible to malignant hyperthermia.

 

Visit the Medical Professionals section on the MHAUS website at http://medical.mhaus.org/ and click on “MH Guidelines” for more information.

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