🌍 Rare Disease Day – 

Shedding Light on Periodic Paralysis

By Susan Q. Knittle-Hunter
Founder, Periodic Paralysis Network

Every year on February 28th (or 29th in leap years), the world observes Rare Disease Day — a day set aside to raise awareness for conditions that affect small numbers of people but have life-altering consequences.

One of those rare conditions is Periodic Paralysis.

And for many of us, it is not just rare — it is invisible.

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What Is Periodic Paralysis?

Periodic Paralysis is a rare genetic mineral metabolic disorder known as a channelopathy — meaning the problem lies in the tiny ion channels within our muscle cell membranes.

These channels regulate the movement of electrolytes such as potassium and sodium in and out of muscle cells. When they malfunction due to genetic mutations, muscles may suddenly become weak, heavy, or completely paralyzed.

There are several types, including:

• Hypokalemic Periodic Paralysis (HypoKPP)
• Hyperkalemic Periodic Paralysis (HyperKPP)
• Normokalemic Periodic Paralysis (NormoKPP)
• Andersen-Tawil Syndrome (ATS)
• Paramyotonia Congenita (PMC)

Each type involves episodes of weakness or paralysis — sometimes lasting hours, sometimes days.

Unlike many diseases, Periodic Paralysis does not always leave visible markers. Between attacks, a person may look completely healthy. But inside, the ion channels remain unstable — always one trigger away from another episode.

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How Rare Is Rare?

In the United States, a disease is considered rare if it affects fewer than 200,000 people.

Periodic Paralysis affects approximately 1 in 100,000 people — and likely more, due to misdiagnosis and underdiagnosis.

Many patients are told they have:

• Anxiety
• Conversion Disorder
• Functional Neurological Disorder (FND)
• Chronic fatigue
• Fibromyalgia

Others go decades without a diagnosis.

This is one of the reasons Rare Disease Day matters.

When something is rare, it is often dismissed.

When something is invisible, it is often misunderstood.

When something fluctuates, it is often questioned.

But Periodic Paralysis is real. It is genetic. It is physiological. It is measurable — even when potassium levels appear “normal.”

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More Than Just Paralysis

The name “Periodic Paralysis” sounds dramatic — but it is also misleading.

Many patients experience:

• Crushing fatigue
• Muscle pain
• Myotonia (muscle stiffness)
• Cardiac arrhythmias (especially in ATS)
• Breathing muscle weakness
• Temperature sensitivity
• Exercise intolerance
• “Spellish” prodrome symptoms before full attacks

Some of us experience subtle symptoms daily — not just during full paralysis episodes.

And yet, because attacks come and go, we are often not believed.

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My Philosophy of Care: Stabilize the Body, Respect the Channels

Over decades of living with Periodic Paralysis and working with thousands of patients, I have developed a philosophy that centers on:

🌿 Natural Stabilization First

While medications absolutely have a place and can be lifesaving, many people with PP find significant benefit from:

• Careful dietary management
• Potassium balance awareness
• Avoiding known triggers
• Gentle pacing and rest
• Avoiding overexertion
• Supporting metabolic stability
• Reducing stress load

Periodic Paralysis is not just about potassium numbers.

It is about channel stability.

The body must be respected — not pushed.

Rest is not weakness.

It is preservation.

Overexertion often causes deeper crashes and longer recovery times. Many of us have learned — the hard way — that “pushing through” creates more damage.

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Why Awareness Matters

Because Periodic Paralysis is rare:

• Emergency rooms may not recognize it.
• Doctors may not test potassium at the right time.
• Patients may be misdiagnosed as psychological.
• Children may be misunderstood.
• Oxygen needs may be dismissed.
• Arrhythmias may be overlooked.

Rare Disease Day gives us a voice.

It reminds the world that just because something is rare does not mean it is insignificant.

For those of us living with PP, it is daily.

It is real.

It is complex.

And it deserves respect.

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To Those Living With Periodic Paralysis

You are not alone.

Even if your disease is rare…

Even if your potassium reads “normal”…

Even if others do not understand…

Your experience is valid.

Your symptoms are real.

Your body is not betraying you — it is dealing with unstable ion channels.

And with knowledge, pacing, awareness, and proper care, stability is possible.

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On This Rare Disease Day

Let us shine a light on the invisible.

Let us educate without anger.

Let us advocate without fear.

Let us support without judgment.

And let us continue to build a community where no one with Periodic Paralysis has to search for decades to find answers.

With hope and strength,

Susan Q. Knittle-Hunter

Founder, Periodic Paralysis Network

Picture: Child with Periodic Paralysis in a paralytic episode in the hospital.

This article has been enriched by the utilization of tools developed by Open AI