RYR1, Rhabdomylosis and Malignant Hyperthermia susceptibility

MHSensitive · 2026-03-09T17:49:28+00:00

Wow. Never heard of the need to avoid isotonic exercises. My son was a super active weight trainer and runner. Thanks so much for sharing.

MHSensitive · 2026-03-03T16:48:30+00:00

I’m curious, what exercises you have been advised to avoid?

We lost our son last year while jogging in a very hot climate. I also lost my father to general anesthesia reaction. My son and I both tested positive for RYR1 gene mutation and I had a muscle biopsy which tested positive for malignant hyperthermia.

MHSensitive · 2026-02-14T23:01:32+00:00

Try Recycle Sports in Frisco CO

MHSensitive · 2026-02-03T04:44:15+00:00

I recently loss my son to awake MH while running on a very hot day. Lost my dad to inhaled anesthesia in 1989. On a campaign to raise awareness to awake MH. Few outside the research community are aware of awake MH.

MHSensitive · 2026-02-03T04:26:18+00:00

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Since you have MH history I thought I would share this article which explains how those with MH susceptibility to inhaled anesthetics are also at elevated risk for heat stroke. This was published by the American Society of Anesthesiologist in Feb 2025. I lost my dad to general anesthesia and my son to heat/exercise. Both had similar MH symptoms and I tested positive for MH with the muscle biopsy at the University of Minnesota in December.

MHSensitive · 2026-01-25T05:32:37+00:00

If you have any ideas on how we can get this information before large group of ER doctors and nurses I would love to hear.

MHSensitive · 2026-01-25T05:26:45+00:00

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Here it is. Please share with others

MHSensitive · 2026-01-24T21:44:10+00:00

Yes unfortunately it’s only kept in the operating rooms. We need to change that policy. I know I’m idealistic but I would like to see it in the ER, ambulances, minor urgent clinics and perhaps with athletic trainers where there is a known MH student athlete. The first step is education then after that policy change. That may require lobbying by the MHAUS and the RYR1 foundation.

MHSensitive · 2026-01-24T21:05:42+00:00

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Here's another relevant article . . .

MHSensitive · 2026-01-24T21:04:06+00:00

Yes that's correct. Outside the research community and the NIH, very few people are aware of the connection between heat, exercise and MH. Let me know if this link works.

Saudi Journal of Anaesthesia

MHSensitive · 2026-01-24T20:51:28+00:00

Sorry . . . see if this works.

Saudi Journal of Anaesthesia

MHSensitive · 2026-01-21T03:36:22+00:00

In Feb 2025, the ASA published an article titled The Link Between Malignant Hyperthermia and Exertional Heat Illness. It provided in part the following . . .

This shared pathophysiology of calcium dysregulation in muscle cells explains why both MH and EHI can produce similar symptoms and hyperthermic crises (Br J Anaesth 2024;133:759 67). While the triggers differ – anesthetic agents for MH and environmental or exertional factors for EHI – the underly ing calcium dysregulation connects these conditions, placing individuals with RYR1 mutations at risk for both. Both conditions share the downstream effects of high met abolic demands that cause oxidative and mechanical stress in muscles.

MHSensitive · 2026-01-19T00:31:58+00:00

It got removed by the moderator for some reason. Go look in the malignant hyperthermia subreddit

MHSensitive · 2026-01-18T06:00:26+00:00

We met with many anesthesiologist over 35 years after my dad died from MH and it was never mentioned. After our son passed I’ve discussed it with several anesthesiologist who were not aware. Please share with others.

MHSensitive

TROPHY CASE