Regular updates by our President, MHAUS staff, and guest contributors.
Although malignant hyperthermia (MH) is an uncommon disorder, when it happens to you or your family member, it becomes a frequent and common topic of concern and animated conversation.
Thus, when one of our family members requested the Malignant Hyperthermia Association of the United States (MHAUS) develop a resource to begin to answer questions that regularly rose to the forefront when a family is given an unexpected diagnosis of malignant hyperthermia . As this diagnosis could come from within the patient’s immediate family or their extended family members, the basic question seemed to remain the same, "I have been told I have malignant hyperthermia – now what does that mean for my life?"
MHAUS felt this was a very important and recurring area of concern not only for the MH-susceptible individual, but also for their healthcare providers across many disciplines. To address this need, in mid-September 2013, we gathered a group of dedicated individuals from both the healthcare professional and the patient side to work together on the project we called "MH Genetics 101". The group contained MHAUS staff, a genetic counselor who was also an MH-susceptible individual, a parent who tragically lost his child to MH, personnel from one of the genetic testing centers and one of their genetic counselors, as well as a board member who happens to be a genetic expert and is known worldwide. Additionally, the final document went through a number of iterations after receiving input and perspective from MHAUS Professional Advisory Council members and other MH experts.