Serving the Periodic Paralysis community for over 20 years
Welcome to
Periodic Paralysis International
Periodic Paralysis International is dedicated to advocacy and research for the
rare disease Primary Periodic Paralysis (all forms). To provide easy access to
current medical research as well as empowering and connecting affected
individuals and families around the world.
Shining a light on the rare, connecting voices worldwide
Be A Part Of The Action!
Join our global community by becoming a member of the PPI and receive newsletters, virtual support meeting invites, participate in researched based surveys and more!
Want to get even more involved? Or make a financial contribution? Learn how you can make an impact!
What is Periodic Paralysis?
Primary Periodic Paralysis is a group of rare genetic disorders characterized by recurring episodes of mild to extreme muscle weakness, stiffness, or paralysis. These episodes may vary from affecting a single limb to the entire body, and can last several minutes, hours, or days. What triggers an episode varies from patient to patient and may be caused by a variety of factors such as stress, eating certain foods, consuming alcohol, resting after exercise, sleep, becoming chilled or overheated. Symptoms of Periodic Paralysis can manifest at any age but most commonly begin during childhood or puberty.
There are four different forms of Periodic Paralysis all involving defects in ion channels. Ion channels are gateways that let charged minerals (ions) such as sodium and potassium flow into and out of your muscle cells. This flow of ions is a central part of what makes our muscles work. In Periodic Paralysis the ion channels have flaws, flow is disrupted, causing an imbalance. The muscle cells then fail to contract or relax in response to the nerve signals.
The Four Types of Periodic Paralysis:
- Hypokalemic Periodic Paralysis
- Hyperkalemic Periodic Paralysis
- Anderson-Tawil Syndrome
- Thyrotoxic Periodic Paralysis
Explore How can We Help You
Diagnosing Periodic Paralysis
Where do I begin and what’s my next step?
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Managing Periodic Paralysis
For patients and caregivers looking for treatment, support, and additional resources.
FAQ’s and Ask the Experts
Find answers to many of your questions. Link provided with permission from source.
Let’s Connect
Find others who are also affected by PP near you or abroad who understand your challenges and can empathize with your experiences. Share journeys and gain insights from others going through similar circumstances.
Social Media Groups
Social Media offers several groups dedicated to Periodic Paralysis (PP), providing a valuable way to connect with others who understand the journey. The Periodic Paralysis Support Network (PPSN), led by Director Ralph Berthiaume, is the largest of these communities with more than 3,000 members worldwide. Ralph and his team work diligently to share current information and resources on all forms of PP while fostering a friendly and interactive environment.
Both the PPA and PPI have Facebook pages, and PPI also hosts a Facebook group that is primarily used for announcements and upcoming events notifications. Word of caution: Please remember that information shared on social media should never be taken as medical advice. Always do your own research and consult with your doctor before
making any changes to your healthcare plan.
In Person Conferences and Get-Togethers
In-person events are a wonderful opportunity to share your experiences, make long lasting friendships, and find comfort in knowing you are not alone in this journey. From time to time, smaller group gatherings and casual regional dinners take place, providing a warm and uplifting way to connect on a more personal level.
The Periodic Paralysis community is fortunate to have a biennial conference hosted by the Periodic Paralysis Association. Next conference will be held October 4th – 5th, 2025 in Orlando, Florida. This is a hybrid event allowing for both in-person and virtual attendance. Attendees will hear first-hand from some of the nation’s leading experts in Periodic Paralysis, while also having the chance to connect, share, and socialize with fellow community members from around the globe. This is a unique opportunity to learn, engage, and be inspired. Hope to see you there! To learn more and register, click below.
Webinars and Virtual Support Group sessions
Stay updated on the latest information from experts specializing in Periodic Paralysis and hear from Rare disease Advocates during various webinars offered throughout the year. Attend virtual support meetings and connect on a more personal level. These gatherings are hosted by organizations within the PP Community, such as Periodic Paralysis Association (PPA), Periodic Paralysis Support Network (PPSN), and Periodic Paralysis International (PPI).
We’ll do our best to keep you updated on these opportunities, as providing reliable resources and fostering meaningful connections is very important to us. Together, we can help our community thrive!
Honoring our founders
the Greant Family, Tina Stark, and the late Don Anderson
Without the lifelong dedication of Deb and Ian Greant as well as Tina Stark and the Late Don Anderson, the Periodic Paralysis International along with and the creation of HKPP.org would not have existed. Their countless hours of research working closely with the late Dr. Frank Lehmann-Horn over the years generated a wealth of the documentation resources made available to the public. Their invaluable work not only advanced research efforts but also improved understanding of this rare and often misunderstood group of diseases. Their relentless pursuit of answers and dedication to providing support to a community of people often shunned has earned them a place as pioneers in the field of Periodic Paralysis.
The Periodic Paralysis International will forever be grateful.
Website sponsored in part by:
Commentary
Periodic Paralysis Patient Spotlight
Every quarter we will feature three patients affected by PP. Sharing can be in the form of a short story, poem, artwork, or video. Not only will help us to spread awareness but it can also help others to know they are not alone. Please feel free to contact us if you would like to share your story.
Wispy clouds lessened the moon light that guided my walk to the pasture. Upon my arrival at the mouth of the valley, I began calling the cows. It was 4:15 am.
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Hello there! I’m Holly – I’m an awesome Aunt, a Cosplayer, a Physical Therapist Assistant, and I have HyperKalemic Periodic Paralysis. I was clinically diagnosed in October of 2021.
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Hiya! I’m Jared, an aspiring author. I wrote and narrated a short story about my experience with HypoKPP. The story opens with me, currently in an episode, reflecting on when I was first diagnosed. The audio aims to raise awareness about this condition and to depict what an attack is like in a more accessible, story-based form.
Read More
Contact Us
We value your input.
Is there something of interest you would like to see featured on the website? Have an idea for a webinar or topic you would like featured during an online support meeting? Send us a message, we would love to hear from you!