MHAUS Newsletter, June 2008

In this issue:

• MH Patient Mini-Conference Scheduled for September 27th & 28th in Tampa, Florida
  Make your plans now to attend the annual MH Patient Mini-Conference
• MHAUS Works With Local and National Media to ‘Get the Word Out’
  MHAUS has fielded multiple questions from both local and national media in wake of the tragic death of an 18-year-old high school student during elective plastic surgery at a Florida ambulatory surgical center.
• Facebook Keeps Friends of MHAUS Connected
  It’s easy to join Facebook as a friend of MHAUS.
• MHAUS Exhibits at Critical Care Exposition
  This year’s conference was “full” with 9,500 attendees, including MHAUS’ Executive Director and Scientific Officer.
• Exploring Links Between Exertional Heat Illness and Malignant Hyperthermia
  Dr. Sheila Muldoon, MHAUS Vice-President, Scientific Development, spoke on this topic at the American College of Sports Medicine.

The Malignant Hyperthermia Association of the United States (MHAUS) is holding its annual Malignant Hyperthermia (MH) Patient Mini-Conference at the Tampa General Hospital in Tampa, Florida, on September 27 and 28, 2008. The cost to attend this valuable conference is only $25.00 for medical professionals and $15.00 for MH-susceptible patients and their families.

 

The conference provides updates by medical professionals on the status of MH research and testing, which includes the latest on molecular genetic testing, discussion on how to recognize and treat MH, and a question and answer session where medical professionals and MH-susceptible patients can share experiences. The conference also includes a “mock” MH drill, as well as information and tools that MH-susceptible patients can use and share with their anesthesia care provider. The plan is to repeat the topics on both days to better accommodate the schedules of attendees.

 

Scheduled speakers at this year’s conference include Dr. Henry Rosenberg, Director of the Department of Medical Education and Clinical Research at Saint Barnabas Medical Center in Livingston, New Jersey, Professor of Anesthesiology, and current President of MHAUS; Dr. Mohanad Shukry, Assistant Professor, Anesthesiology at Children’s Hospital of Oklahoma in Oklahoma City, Oklahoma and MH Hotline Consultant; and Ms. Deanna Steele, Genetic Counselor at Magee’s Center for Medical Genetics at the University of Pittsburgh Medical Center in Pittsburgh, Pennsylvania.

 

The conference is being developed by MHAUS’ Patient Liaison Committee in coordination with Brian Cowin, RN, BSN of Critical Intervention Educators, Inc., based in Tampa.

 

MHAUS invites all interested persons to attend its MH Patient Mini-Conference. Visit www.mhaus.org or email info@mhaus.org or call 607-674-7901 for registration and details. If you would like to request that you or your facility be put on a waiting list for an upcoming conference, please contact Fay Kellogg at fay@mhaus.org.

Malignant Hyperthermia (MH) has received renewed attention from both local and national media in wake of the tragic death of 18-year-old Stephanie Kuleba during elective plastic surgery at an ambulatory surgery center in Florida this past March. MHAUS has fielded multiple questions from the media in the past month in an effort to ‘get the word out’ and provide a better understanding about the risks of MH.

 

Quoted in the April 30, 2008, issue of “The Wall Street Journal,” MHAUS President Dr. Henry Rosenberg said incidents of MH are likely underreported, estimating that there are about 1,000 cases a year. In the article, Dr. Rosenberg also stressed the importance that ambulatory surgery centers have an adequate supply of dantrolene, the only known antidote for MH. To read the “The Wall Street Journal” article, visit http://online.wsj.com/public/article/SB120950929636954247.html?mod=2_1566_le

 

In a separate feature airing on the FOX News 24 WFXT station in Boston, MHAUS staff provided the name of an MH-susceptible patient who agreed to be interviewed for the story. The story aired Monday, May 12, and also included comments from Dr. Charles Cote, Director of Clinical Research, Pediatric Anesthesia, at Massachusetts General Hospital. To view the FOX story in its entirety, visit http://media.myfoxboston.com/news/specials/anesthesia.html

 

Recent studies indicate that as many as 1 in 3,000 people may have the genetic mutation that predisposes them to MH. Although the death rate has fallen to less than 5%, there is still much to be done to ‘get the word out’ to both physicians and MH-susceptible patients about the risks and treatment of MH.

 

MHAUS provides many services to help promote MH awareness and preparedness. One such service is the Speakers Bureau. 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. 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 Michael at MHAUS either by phone, 607-674-7901 or by email at Michael@mhaus.org.

 

MHAUS wants you as a friend on our Facebook profile. Join now by visiting http://www.facebook.com/p.php?i=1066717050&k=ZVC36WWZP4ZM51EDSFW2SW&r&v=2.

 

It’s easy to join. All you need is a valid email address. Once you register, join a network of people who share a common cause. For those unfamiliar with it, Facebook is a social utility that connects people with friends and others who work, study and live around them. People use Facebook to keep up with friends, upload an unlimited number of photos, share links and videos, and learn more about the people they meet.

 

The Facebook profile is just one more way MHAUS is working to maintain and enhance communication with our members. Similarly, MHAUS recently launched the “President’s Blog.” Check it out at http://www.mhaus.org/presidentsblog. Post a comment or check out some of the favorite links.

MHAUS Executive Director Dianne Daugherty and MHAUS Scientific Officer Sharon Dirksen attended the American Association of Critical-Care Nurses “National Teaching Institute & Critical Care Exposition” (NTI) in Chicago on May 3rd through the 8^th.

 

“We thought they would be interested in neuroleptic malignant syndrome (NMS) but found the audience was a little more interested in malignant hyperthermia (MH),” said Ms. Daugherty. “We did learn that the intensive care unit sometimes “becomes” the post anesthesia care unit when dealing with an emergency.”

 

This is the premier conference for medical professionals who care for acutely and critically ill patients and their families. The conference attracts professionals from a range of disciplines: cardiac nurse, pediatric and neonatal nurse, progressive care nurse, emergency and trauma nurse, advanced practice nurse, nurse manager and directors. It was a “full conference” of 9,500 attendees.

 

“We met a number of educators at the booth and shared quite a lot of material,” said Ms. Daugherty. “We found interest in our e-newsletter and made some connections for future efforts.”

 

To learn more about the American Association of Critical-Care Nurses, visit http://www.aacn.org.

Dr. Sheila Muldoon, MHAUS Vice-President, Scientific Development, spoke on this topic on May 28 at the American College of Sports Medicine. Dr. Muldoon’s discussion followed her report, co-authored with Drs. Patricia Deuster, Maria Voelkel, John Capacchione, and Rolf Bunger, and published in the March/April 2008, Volume 7, No.2 issue of Current Sports Medicine Reports www.acsm-csmr.org, entitled “Exertional Heat Illness, Exertional Rhabdomyolysis, and Malignant Hyperthermia: Is There a Link?”

 

The report discusses possible links between exertional heat illness (EHI), malignant hyperthermia (MH), and exertional rhabdomyolysis (ER). Evidence on clinical, genetic, and functional aspects, though limited, is compared through individual case reports and a small number of clinical studies. Typically, MH occurs during anesthesia and surgery, EHI during strenuous exercise in hot and humid environments, and ER unrelated to heat and humidity after strenuous exercise.

 

Genetic analysis of the RYR1 gene has identified various mutations, especially in MH, but also in some cases of EHI and in number of ER cases as well. Pathophysiologically, loss of intracellular calcium control appears to be a common feature. Recommendations for treatment and recovery include cooling and administration of dantrolene for MH, cooling and aggressive fluid administration for EHI, and physical rest and aggressive intravenous fluid administration for ER.

 

Dr. Muldoon’s discussion also included a recent report, published in the journal, Cell, www.cell.com which found a mutation in a gene controlling calcium flux in skeletal muscle cells linking MH to enhanced susceptibility to heat stroke and sudden death.