Patient

The Patient and Caretakers Section

Hospital Management Guidelines for Paramyotonia Congenita Patients

 

Hospital Management Guidelines for Paramyotonia Congenita Patients

Patient's Name:

Birthdate: ________Height: _______Weight: _______

Address:

Primary Physician:

Emergency contact:  Your emergency contact should be someone who can speak for you when you cannot advocate for yourself.
Name:                                                                               Relationship:
home phone#                                         cell #                            FAX:

Hospital Management Guidelines for Normokalemic Periodic Paralysis Patients

Hospital Management Guidelines for Normokalemic Periodic Paralysis Patients

Patient's Name:

Birthdate: ________Height: _______Weight: _______

Address:

Primary Physician:

Emergency contact:  Your emergency contact should be someone who can speak for you when you cannot advocate for yourself.
Name:                                                                               Relationship:
home phone#                                         cell #                            FAX:

Starting Acetazolamide (Diamox)

Because this is a frequently asked question from patients we post here a reply:

Question:

My doctor wants to prescribe a medication called acetazolamide. Is that okay for someone with Hypokalemic periodic paralysis. When I look on the web it says this medication causes you to excrete potassium. How can that be good for me?

Answer:

The Life and Death of Aleksandr Batutenko

This article is dedicated to the memory of Aleksandr Batutenko, a person who was not afraid to declare publicly his rare disease. It was written by Aleksandr Batutenko's wife Nadezhda, and it is published here with her permission.

Aleksandr was a brave young man who lost his life trying to clarify his diagnosis for the benefit of other periodic paralysis patients in the Ukraine. 

Did Elizabeth Barrett Browning have Hypokalemic Periodic Paralysis?

Penn State researcher counts the ways poetess Browning may have had rare disease
By Tom Avril; Philadephia Inquirer Staff Writer

Scholars have proposed a number of explanations for the muscle weakness and other ailments that plagued the Victorian poet Elizabeth Barrett Browning. But none of these after-the-fact diagnoses - from anxiety to tuberculosis - seemed to fit the symptoms perfectly. Now Pennsylvania State University researcher Anne Buchanan thinks she has cracked the case, as the result of an intensely personal connection.

The Action Potential - A Movie!

Puzzled by the terms membrane potential, sodium channel, potassium channel and sodium-potassium pump?  

This cute cartoon explains what each is and shows how the potassium and sodium channels, and the sodium potassium pump maintain muscle membrane potential.  Although this uses nerves to illustrate how the principle works, the action is the same in muscle membrane. Click here to watch.

A Quick Overview of Hypokalemic Periodic Paralysis

 

1) Patient has "attacks" of weakness and/or floppy paralysis.

2) First attacks occur by the age of 16 in 65% of patients.

Calibrating the Cardy Potassium Meter

Calibrating the Cardy isn't complicated. It's basically wash and rinse, wash and rinse.  

To clean the sensor you can use distilled water, which is a lot less expensive than buying refills of the "de-ionized" water that comes with the kit. And don't use their testing tape to clean the sensor. Buy Kleenex brand facial tissues in those little pocket packs. They are potassium-free, and work just fine.

To calibrate the meter first:

Periodic Paralysis and the New Mother

Anticipating the Baby

 

Expectant mothers and their doctors can take the secure thought that hundreds of women with periodic paralysis have been members of our Listserv since 1995, and an overwhelming majority of them have been mothers. To date not a single one has been unable to care for her child due to her periodic paralysis.

Meet Our Patients

Irm's Story

The PPI's Client Services Representative in The Netherlands is Irm. Irm and her son were clinically diagnosed with HypoKPP-plus in Germany in September 2011, but she has had symptoms since she was a young child. At the age of 7, she told her parents, “My head is awake but my body still sleeps”. 

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