Periodic Paralysis Awareness

PP Conference Information Webinar!

Join Cienna Ditri PPA president and board member Dr. Tyler Nelson tomorrow (Wednesday, June 10 at 6:00 PM EST), to learn more about what to expect at the 2026 Periodic Paralysis Conference and get your questions answered.

Register here: https://us06web.zoom.us/meeting/register/KiEGAtZOS6SlQqwyPgT_uA — with Cienna Ditri and Tyler Nelson.

2026 Periodic Paralysis Conference – Register Now!

2026 Periodic Paralysis Conference on October 10–11, 2026, in Orlando, Florida at the Hilton Lake Buena Vista(hosted by the PPA).

This is the largest gathering of its kind for patients, families, clinicians, and researchers focused on periodic paralysis.

Two ways to participate:
• In-person attendance
• Live stream (virtual attendance!)

Registration details:
• Registration is officially open now
• Early-bird pricing available until July 1st
• Final registration deadline: August 31st

🔗 Register here:
https://periodicparalysis.org/conference-2026/

If you’ve attended past conferences, please share your experiences and thoughts!

What did you find most valuable? What would you recommend to first-timers? Any tips or highlights you’d like to pass along?

- A common phrase said by people living with periodic paralysis is:

“If I’m Strong Tomorrow, We Can Do It”?

Does anybody else get tired of saying “I’m not sure, we’ll seek how I feel tomorrow, if I’m good we can do it?”

Phrases like these have become default responses for people living with periodic paralysis, because with periodic paralysis, tomorrow is never guaranteed. One day we’re mobile and making plans; the next, an attack leaves us unable to lift a cup, walk across the room or even speak clearly.

We’re exhausted from:

-Canceling plans last-minute (again)
-Explaining why we “look fine” but can’t move
-Hoping tomorrow brings strength instead of paralysis
-Feeling guilty when we have to say no

But here’s what’s also true:

-Our worth isn’t measured by what we can physically do
-Resting isn’t failure, it’s survival
-Our community gets it without explanation
-Every day we manage PP is an act of resilience

To anyone feeling this fatigue today:

You don’t have to carry this alone. Share your story, vent, or just sit here and breathe. We understand your experiences, your strength, and your frustration, and we accept you exactly as you are.

Drop a ❤️ if you’ve felt this exhaustion. Share your experiences or thoughts in the comments. Remember, You Are Not, You Are Seen!!

Submitted by RB, June 6, 2026
Thanks Kim for the inspiration!

Family's world-wide search for diagnosis after doctors dismiss symptoms as autism Josh Docos and Nesa Morey's son, Armani, started having paralyitic fits last year and would sleep up to 16 hours. Doctors told them it was just autism.

• Periodic Paralysis (PP) refers to a group of Channelopathies and are usually genetically inherited. They can causes sudden episodes of muscle weakness, stiffness, or paralysis. These attacks can affect the whole body or just 1 or 2 limbs.

This set of Channelopathies can cause temporary muscle weakness or paralysis. Things like exercise, stress, anxiety, certain types of food even being cold or hot are a few of the things that can trigger these episodes.

In some cases the heart and respiratory system can be affected.

The Periodic Paralyses involve defects in ion channels. These are gateways that let charged minerals (ions) such as sodium and potassium flow into and out of your cells. This flow of ions is a central part of how your muscles work. In PP, the ion channels sometimes fail, and the muscle cells don’t work correctly.

Depending on the form of PP that you have, the symptoms may be mild or severe, and they may last
from minutes to days. Sometimes, the disease may slowly get worse over time and cause permanent muscle damage.

Types of Periodic Paralysis:

Hypokalemic Periodic Paralysis (HypoPP) formally known as Westphall disease.
-A rare genetic, muscle channelopathy characterized by recurrent episodic attacks of generalized muscle weakness associated with a decrease in blood potassium levels.

Hyperkalemic Periodic Paralysis (HyperPP) formally known as Gamstorp disease.
-A rare muscle disorder characterized by episodic attacks of muscle weakness associated with an increase in serum potassium concentration.

Andersen Tawil Syndrome (ATS)
-A disorder that causes episodes of muscle weakness (periodic paralysis), changes in heart rhythm (arrhythmia), and dysphoric features.

Paramyotonia congenita (PMC)
-A rare non-progressive genetic disorder that affects the skeletal muscles. Affected individuals experience spells of muscle stiffness or when the muscles do not relax after contracting.

• Periodic Paralysis (PP) refers to a group of Channelopathies and are usually genetically inherited. They can causes sudden episodes of muscle weakness, stiffness, or paralysis. These attacks can affect the whole body or just 1 or 2 limbs.

This set of Channelopathies can cause temporary muscle weakness or paralysis. Things like exercise, stress, anxiety, certain types of food even being cold or hot are a few of the things that can trigger these episodes.

In some cases the heart and respiratory system can be affected.

The Periodic Paralyses involve defects in ion channels. These are gateways that let charged minerals (ions) such as sodium and potassium flow into and out of your cells. This flow of ions is a central part of how your muscles work. In PP, the ion channels sometimes fail, and the muscle cells don’t work correctly.

Depending on the form of PP that you have, the symptoms may be mild or severe, and they may last
from minutes to days. Sometimes, the disease may slowly get worse over time and cause permanent muscle damage.

Types of Periodic Paralysis:

Hypokalemic Periodic Paralysis (HypoPP) formally known as Westphall disease.
-A rare genetic, muscle channelopathy characterized by recurrent episodic attacks of generalized muscle weakness associated with a decrease in blood potassium levels.

Hyperkalemic Periodic Paralysis (HyperPP) formally known as Gamstorp disease.
-A rare muscle disorder characterized by episodic attacks of muscle weakness associated with an increase in serum potassium concentration.

Andersen Tawil Syndrome (ATS)
-A disorder that causes episodes of muscle weakness (periodic paralysis), changes in heart rhythm (arrhythmia), and dysphoric features.

Paramyotonia congenita (PMC)
-A rare non-progressive genetic disorder that affects the skeletal muscles. Affected individuals experience spells of muscle stiffness or when the muscles do not relax after contracting.

• THE EARLY HISTORYOF PERIODIC PARALYSIS

Periodic paralysis (PP) is a rare genetic muscle condition that causes episodes of weakness or temporary paralysis. What many people don’t know is that the history of PP goes back more than 300 years!

THE VERY FIRST DESCRIPTION
In 1698, a physician named William Musgrave in England wrote about a mysterious condition he called “periodical palsy.” He described patients who suffered from unusual, repeated episodes of weakness, what we now recognize as the earliest documented cases of Periodic Paralysis.

- Musgrave’s original letter can still be read through the Royal Society archives: [William Musgrave’s 1698 letter on periodical palsy](https://makingscience.royalsociety.org/items/rbo_7_80/letter-from-william-musgrave-dated-4-june-1698-at-exeter-concerning-periodical-palsy?page=1)

WESTPHAL AND HYPOKALEMIC PERIODIC PARALYSIS
In 1885, German neurologist Carl Westphal studied patients with repeated episodes of weakness connected to drops in blood potassium. This condition became known as Westphal’s Syndrome or Hypokalemic Periodic Paralysis (HypoPP).
-What happens?
Potassium levels in the blood fall, leading to temporary paralysis or weakness.
- How long do attacks last? Usually hours to days.
- Common triggers: high-carb meals, rest after heavy exercise, or stress.
- Learn more about him: [Carl Westphal – Life in the Fast Lane](https://litfl.com/carl-westphal/)

GAMSTORP AND HYPERKALEMIC PERIODIC PARALYSIS
In 1956, Swedish pediatrician Ingrid Gamstorp reported another form of periodic paralysis: Gamstorp Disease, now called Hyperkalemic Periodic Paralysis (HyperPP).
- What happens?
Potassium levels in the blood rise, instead of falling.
- How long do attacks last?Often shorter, minutes to hours.
- Common triggers: fasting, potassium-rich foods, or rest after exercise.
- Read more here: [Ingrid Gamstorp – Life in the Fast Lane](https://litfl.com/ingrid-gamstorp/)

WHY THE NAMES CHANGED
Today, instead of using the older names like Westphal Syndrome or Gamstorp Disease, doctors usually use HypoPP and HyperPP. These names describe the potassium connection more clearly and avoid confusion.

A LONG HISTORY, A STRONG COMMUNITY
From Musgrave’s first description in 1698, to Westphal and Gamstorp’s detailed reports, the history of Periodic Paralysis is long and fascinating. What hasn’t changed is the challenge people with PP face every day, and the importance of connecting with others who truly understand.

For those who want to read more about the historical development of periodic paralysis, there’s also this detailed article: [History of Periodic Paralysis – NIH / NCBI (2018)](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6063177/ )

Submitted by RB, February 2021, Updated June 2025

• Happy Mother’s Day to every mom in our periodic paralysis community.

You parent through the full range of our episodes, from the minor weakness that others might not notice, to the days when your child can hardly move at all.

You plan meals to help prevent episodes, carefully watch your child’s daily activities, and know when to slow things down to keep them safe.

If an episode happens anyway, you know exactly what to do to help them.

You pay close attention to their periodic paralysis, often worrying more about their body than your own, and quietly carry that responsibility with love.

You carry a lot, and today we want you to know it matters and you are appreciated.

Your care, your patience, and your advocacy do not go unnoticed. You are loved, you are seen, and you are part of a community that understands and supports you.-RB