Support to help you manage the condition
Finding out you have Primary Periodic Paralysis may cause concerns and questions about what this diagnosis means for you, both today and into your future. That’s why we’ve developed a variety of tools and resources to help you learn more about your condition and get the most out of the treatment plan your doctor recommends.
Uncovering Periodic Paralysis genetic testing brochure
Uncovering Periodic Paralysis is a no-cost genetic testing program for those who have episodic muscle weakness or temporary paralysis provoked by common triggers for hyperkalemic or hypokalemic periodic paralysis.
Primary Periodic Paralysis Daily Tracker & 3-Month Diary
The Daily Tracker Tool is a downloadable PDF that gives you an easy-to-use form to keep a record of your attacks, including:
- When they occurred
- What triggers were involved
- How severe they were
- How they affected you
Keeping track of this information will help you better understand your attacks so you can have more informed conversations with your doctor.
The 3-Month Diary is designed to help you in becoming your own advocate. This downloadable form lets you summarize key information from your attacks over a 3-month period, including:
- A summary of your attacks
- How lifestyle modifications and medications worked
- How the attacks impacted your life
Collecting this information on a single, at-a-glance form will help guide you and your doctor in discussions about your condition and individual management needs.
Doctor Discussion Guide
The Doctor Discussion Guide is a PDF for you to use in planning ahead for your doctor visits. It is designed to help you:
- Organize your thoughts and health information
- Put together a list of questions for your doctor
Using this guide as a checklist will help you get ready for your visit so you get all the answers you need before you leave the office and feel confident about your treatment plan.
An Online PPP Community
The Inspire community is an online support group designed to connect patients and caregivers living with PPP. Members can connect with each other and provide support, as well as share valuable support and information.
Muscular Dystrophy Association (MDA)
A nonprofit organization whose mission is to provide hope and answers to families living with diseases that take away muscle strength and mobility.
Periodic Paralysis Association
The Periodic Paralysis Association is a nonprofit charitable corporation founded to foster awareness of the periodic paralyses, promote science-based information regarding this class of disorder, and champion the interests of the periodic paralysis community.
Periodic Paralysis International
A mission-driven, independent and not-for-profit whose goal is to help create successful partnerships between physicians, researchers, and periodic paralysis patients in order to speed diagnosis and improve therapy and management strategies, thereby improving quality of life and clinical outcomes for patients.