💬 How to Advocate for Ourselves or a Loved One with Periodic Paralysis
By Susan Q. Knittle-Hunter, Founder, Periodic Paralysis Network
Advocating for ourselves—or a loved one—with Periodic Paralysis (PP) can
feel overwhelming. We are often met with disbelief, misdiagnoses, and even
hostility from medical professionals unfamiliar with this rare and
misunderstood condition. I know firsthand how difficult it can be. I was
misdiagnosed for over 50 years and harmed by treatments that should never have
been given. That’s why learning to advocate—clearly, persistently, and
kindly—is not only important… it is essential for survival.
Here are key strategies to help you advocate effectively:
🧭 1. Know Your
Condition Inside and Out
Understanding your specific type of PP—whether Hypokalemic, Hyperkalemic,
Andersen-Tawil Syndrome, or another variation—is the foundation of good
advocacy. Learn how your symptoms present, what triggers you, and what
treatments help or harm.
📌 Tip: Keep a journal of symptoms,
potassium levels, triggers, and responses. This will help you speak
clearly and show doctors what’s happening.
🧾 2. Bring Your Own
Documentation
Because PP is rare and frequently misunderstood, many medical providers
may have never seen a case before. Don’t rely on them to know the details.
Instead, bring credible materials with you.
Here’s what to prepare:
- A summary of your diagnosis
(clinical and/or genetic)
- A brief emergency protocol or
medication warning (especially if you cannot take anesthesia or IVs)
- Copies of my books or blog
printouts for reference (highlight the parts that apply to you)
🗣 3. Practice Calm,
Assertive Communication
In moments of fear or stress, it’s easy to become emotional—and rightly
so. But effective advocacy means staying calm and clear. Practice short,
respectful scripts like:
📌 Tip: If a doctor refuses to listen,
ask respectfully for another provider—or say, “Thank you for your time,” and
find someone who will listen.
💡 4. Educate Loved
Ones & Allies
Sometimes, we are too weak or too vulnerable to speak for ourselves.
That’s why it’s vital to educate a trusted friend, spouse, or family member.
Help them learn your condition, carry your records, and speak on your behalf if
you are unable.
🏥 5. Know Your Rights
in the Medical System
Patients have the right to:
- Refuse treatments (especially
harmful medications)
- Ask questions and receive answers
- Request a second opinion
- Access and share their medical
records
🧾 Bring a written copy of your
emergency protocol or treatment plan. If you’ve been harmed in the past by
specific drugs, clearly state it and include documentation.
📌 Tip: Consider using a Medical ID
bracelet, emergency wallet card, or custom medical alert document—all
of which can be downloaded from the Periodic Paralysis Network Blog
Resources.
🌱 6. Stay Empowered
Through Natural Tools
Advocacy also means taking control of what we can do: diet,
lifestyle, stress reduction, and energy conservation.
Natural advocacy means:
- Eating a clean, low-carb,
potassium-aware diet
- Avoiding triggers (e.g., stress,
chemicals, temperature extremes)
- Getting support—through groups
like PPNI and our blog
💬 Final Words of
Encouragement
Self-advocacy isn’t easy, but it is sacred work. Whether you’re speaking
up in a doctor’s office, educating a caregiver, or just saying “no” to a
harmful treatment—you are protecting your life. And when you advocate for a
loved one, you are showing love in one of the most powerful ways possible.
We are here with you.
📚 References &
Resources:
- Knittle-Hunter, S.Q. (2014). Living
with Periodic Paralysis: The Mystery Unraveled
- Knittle-Hunter, S.Q. (2015). What
is Periodic Paralysis? A Disease Like No Other
- Knittle-Hunter, S.Q. (2016). The
Periodic Paralysis Guide and Workbook: Be the Best You Can Be Naturally
- Knittle-Hunter, S.Q. (2019). A
Bill of Rights for Periodic Paralysis Patients
- PPNI Blog Articles:
- "Self-Advocacy: Speaking Up
for Your Needs"
- "How to Communicate With
Your Doctor About PP"
- Genetic and Rare Diseases
Information Center (GARD): https://rarediseases.info.nih.gov
Picture: A
man alone in a wheelchair.
Here's a custom Emergency Card Template for individuals with
Periodic Paralysis. It’s designed to be printed, laminated, and carried in a
wallet, purse, or clipped to a medical ID band.
🛑 EMERGENCY MEDICAL
CARD – PERIODIC PARALYSIS
Medical Alert: I have a rare genetic disorder called PERIODIC PARALYSIS
(e.g., Andersen-Tawil Syndrome, Hyperkalemic or Hypokalemic PP)
🧬 Condition Information:
- My muscle weakness/paralysis is
triggered by potassium shifts, stress, exercise, rest, anesthesia,
IVs, and some medications.
- I may appear unresponsive,
paralyzed, or confused—but I am not having a seizure or stroke.
- My potassium level may be high,
low, or shifting within normal range.
- This is a channelopathy,
not a primary muscle or nerve disease.
🚫 DO NOT GIVE:
- IV fluids containing potassium
- Anesthesia or sedatives (unless pre-approved)
- Steroids, beta blockers, insulin,
diuretics, or glucose without confirming potassium status
✅ I MAY NEED:
- Potassium or carbohydrate orally — only if tested and
confirmed low
- Rest in a safe, quiet place
- Monitoring of potassium, heart
rhythm, respiratory status
- Avoidance of IVs and medications
that have harmed me in the past
📋 Diagnosis:
Genetic Mutation (if known): _______________________
📇 My Name: _______________________
🧾 My Physician/Specialist:
📚 More Info:
🔲 Optional Back Side:
Personal Notes
- Known triggers:
_____________________________
- Medications to avoid:
_______________________
- Last potassium level:
_______________________
- Other conditions:
___________________________
