Submitted by Anonymous (not verified) on Mon, 05/08/2017 - 06:25
This comprehensive article is from the National Organization for Rare Disorders (NORD)
NORD gratefully acknowledges Rabi Tawil, MD, University of Rochester Medical Center, Professor of Neurology for assistance in the preparation of this report.
Synonyms of Andersen-Tawil Syndrome
Andersen Syndrome
ATS
Long QT Syndrome 7
LQTS7
General Discussion
Summary
Submitted by deb on Tue, 04/12/2016 - 22:54
Adverse reactions to anaesthesia, including life-threatening events, are a serious concern for patients with Periodic Paralysis Disorders. Many of our patients report serious events associated with anesthesia and side effects which may linger for days to months.
There is rarely time for a surgical team to comb through journals and texts for the specialized knowledge needed to care for the patient with periodic paralysis.
Submitted by deb on Sat, 08/01/2015 - 18:51
Optimum Nutrition is important for maintanence of health. Make sure you are eating a healthy diet!
Here are sites where you can find:
Sodium Intake should be kept below 2 grams daily for HypoKPP patients.
Submitted by deb on Sat, 07/25/2015 - 18:54
The antibiotic Bactrim is well-known to produce muscle weakness, even paralysis in patients with Hypokalemic Periodic Paralysis.
Submitted by deb on Mon, 05/19/2014 - 21:54
GUIDELINES ved indlæggelse for Hypokalemisk Periodika Paralyse Patient
Navn & CPRnr
Højde: cm
Vægt: kg
Adresse:
Egen læge:
Emergency contact: navn (tlf: )
+ evt personlige assistent og/eller ledsager:
Submitted by deb on Fri, 08/09/2013 - 20:17
This comprehensive article, written by a practicing physician who has hypokalemic periodic paralysis enables the GP or Neurologist who has never encountered a patient with the disease before to manage them with confidence.
Submitted by deb on Fri, 06/28/2013 - 00:41
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.
Submitted by deb on Tue, 03/12/2013 - 22:24
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:
Submitted by deb on Tue, 07/03/2012 - 18:45
Measuring quality of life impairment in skeletal muscle channelopathies.
Eur J Neurol. 2012 May 19. doi: 10.1111/j.1468-1331.2012.03751.x. [Epub ahead of print]
Sansone VA, Ricci C, Montanari M, Apolone G, Rose M, Meola G; INQoL Group.
Source
Department of Neurology, University of Milan, IRCCS Policlinico San Donato, Milan, Italy.
Abstract
Link to pdf copy of entire article
BACKGROUND AND PURPOSE:
Submitted by deb on Fri, 08/26/2011 - 20:09
In 2009 Professor Dr. Frank Lehmann-Horn of Ulm University, Ulm Germany, gave a presentation on managing hypokalemic periodic paralysis at the Periodic Paralysis Association's conference held in Orlando Florida. This presentation contained so much valuable information in such a compact and understandable format that we asked Dr. Lehmann-Horn for his permission to include it on our website, for the benefit of physicians and patients.
Pages
