Patient

Children with Periodic Paralysis may require extra help or specialized services to be able to attend school. Laura Kaloi, Public Policy Director at the National Center for Learning Disabilities, explains the ins and outs of Individualized Education Programs (IEPs) in this video. For more information about IEPs, see "What Is an IEP?".

Our Spanish-speaking patients may access the Spanish language Medical Information Template. It is in Open Document Format, so patients can add their own information to the template. Thanks to Barbara Baker and friends for translating our Patient's Information Sheet for us.

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

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:

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:

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. 

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.

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.

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

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

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.