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9/20/2014 » 9/21/2014
MHAUS PAC-HLC Meeting

10/13/2014
Malignant Hyperthermia in the Ambulatory Setting


 

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Congratulations Swimmers!


Swimmers at the Geoffrey Keller Memorial Open Water Swim held on June 21, 2014 raised more than $2000 to fund research on better ways of managing Malignant Hyperthermia during surgery, to improve methods of detecting MH, and for MH awareness.
Click here for results for more information and to get involved.




Lisamarie Avallone-Groetzner, Advocate for Central Core Disease and Malignant Hyperthermia Awareness and Education

MH Testing: Knowledge is Power

"When our son Vincent died suddenly on June 14, 2010, we had no idea what happened or why. He was fine one moment and the next complaining of stiffness in his legs, extremely rapid heart rate, and increasing body temperature. After rushing him to the Emergency Department, after they attempted to secure an airway with succinylcholine, he went into cardiac arrest; resuscitative efforts failed. I would not rest until I understood what took my son’s life just two weeks before his 7th birthday. After six weeks, the Medical Examiner advised she was 99% sure that Vincent had a Malignant Hyperthermia episode. Further testing was needed to prove it.

After talking with MHAUS, we coordinated transfer of Vincent’s tissue sample for testing. We had no choice but to go forward in the hope of getting answers for our three other children. We could not lose another. Vincent’s DNA showed an RYR1 variance, which is directly linked to MH. My husband and two of the children have the same variance.

I cannot stress enough the importance and value of genetic testing. Without it, we would not have known how to proactively care for our children to prevent this from happening again. Knowledge is power and if having gone through all this can save even one life, it will have been worth it."

Lisamarie Avallone-Groetzner, Advocate for Central Core Disease and Malignant Hyperthermia Awareness and Education.


Get Involved with People Just Like You

The Malignant Hyperthermia Association of the United States (MHAUS) was founded by families who lost their children to MH or could not find information about MH. In 1981 they found each other - and a doctor performing MH testing – and agreed "to make current information about MH available to all who need it!”

Today MHAUS provides information and resources to medical and lay communities through conferences, educational materials, id tags, membership, 24-hour MH Hotline, and with the help of newly forming chapter groups.

Get involved with people in your area to support MHAUS' mission of promoting optimum care and scientific understanding of MH and related disorders. MH episodes can happen at any time. MHAUS can help you prepare before it’s too late.

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