Periodic Paralysis Conference 2021: An Opportunity for Community and Awareness

On October 30-31, 2021, the Periodic Paralysis Association (PPA) hosted the Periodic Paralysis Conference in Orlando, FL. This event was an opportunity for patients to meet one another, share experiences, build community, and learn critical information from some of the leading periodic paralysis experts in the world. Much of the conference was focused on presentations from experts on some of the latest research. There was also a strong emphasis on Q&A for each presentation and in general, giving patients plenty of opportunities to have some of their most burning questions answered.

About Periodic Paralysis

Periodic paralysis is a group of uncommon genetic illnesses that lead to periods of muscle weakness and paralysis. Paralysis is often triggered by stimuli such as heat, cold, physical exertion, excitement, stress, lack of food, or a meal that is high in carbs. The disease is linked to malfunctions of the ion channels in the cellular membranes of the skeletal muscle cells. This allows charged ions to leak in or out of the cells. These cells then lose polarity and cannot move. There are four different types of periodic paralysis, and all forms except for Andersen-Tawil syndrome are related in varying degrees to fluctuations of potassium levels in the muscle cells. Periodic paralysis is very difficult to diagnose, and the process can often take years. Treatments include carbonic anhydrase inhibitors (ex. dichlorphenamide), avoiding potassium for patients with hyperkalemic form and supplementing potassium in the hypokalemic form, and lifestyle changes. Lifestyle changes include avoiding triggers like extreme temps, carbs, and strenuous exercise. To learn more about periodic paralysis, click here.

The Periodic Paralysis Conference

I was able to attend the conference in person, though the event also had a large virtual audience that was able to follow along via livestream on Facebook. The PPA took several precautions related to COVID-19 as some of these patients are considered high-risk. Everyone in attendance received a COVID test on-site, masks were required for all attendees, and seating was spaced six feet apart.

One of the first things I noticed was that some of the patients had service dogs with them. Service dogs are valuable helpers for periodic paralysis patients because they detect changes in the patient’s scent that occur prior to an attack. An alert response from the dog can provide a valuable warning that can give them time to get to a place of safety before they lose control.

Dr. Stephen Cannon presented multiple times during this year’s conference on multiple topics, such as possibly repurposing a drug to treat periodic paralysis, a fascinating case study involving Monica Cramer (treasurer for the PPA), and the possibility of treating the disorder with CRISPR/Cas 9 gene-editing technology. (Dr. Cannon appeared on Patient Worthy’s podcast in September to discuss periodic paralysis. Listen to that episode here.)

Dr. William Harr presented a specific but important issue that patients may have to deal with: anesthesia during surgery. Physicians during such procedures need to be aware of the patient’s condition and accompanying triggers. In addition, some patients may be at risk for malignant hyperthermia if exposed to certain types of anesthesia.

Dr. Miguel Chuquilin Arista presented about paramyotonia congenita, which is an unusual form of periodic paralysis that also causes myotonia (delayed muscle relaxation) that can be triggered by cold temps and gets worse with exercise.

Dr. Rabi Tawil also presented an update on Andersen-Tawil syndrome, a disorder that has periodic paralysis as one of its symptoms. It also is characterized by heart rhythm abnormalities (though this isn’t present in all cases), fused toes, abnormal curvature of the fingers, short stature, scoliosis, and distinct facial features.

There was also a dinner program which featured a panel of patients who shared their experiences and diagnostic challenges. Overall, the conference was an excellent opportunity for patients to find support, education, and communities related to their rare disease.

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