Warning About Free Genetic Testing For Periodic Paralysis

Hello All,

I do not do this very often but I feel the need to bring this issue to the attention of all those seeking genetic testing for Periodic Paralysis from a pharmaceutical company who is offering it "free," before you see it somewhere else or in case you have already seen it and are planning to take the test or just wondering about it.

PLEASE BEWARE!!! There are several issues that you need to be aware of before you contact this company (Strongbridge...see link at bottom) for "free" genetic testing.

This company is a 'Big Pharma' company who took over the sales of the latest carbonic anhydrase inhibitor drug that is offered for treating Periodic Paralysis. They are offering 'free' DNA/genetic testing for Periodic Paralysis. They are offering the testing in order to be able to then get you on the drug if you are diagnosed, so they can make the big bucks after charging you or the insurance companies an arm and a leg for a drug that takes a few cents to make.

Carbonic anhydrase inhibitors are diuretics that only some people with PP can take without short term and/or long term side effects, which can be serious and possibly even cause death. I and many of us in this support group (PPN) have had serious effects or have nearly died from trying it or the two other forms of it. (Please read the Blog Article I posted at the end of this article for all the details and history behind this drug as well as the side effects etc, from taking it. There are many links included about the side effects, etc. so be sure to read all of it and the other blog articles I have added to it as well.)

(Those of you who do take it and are successful you are lucky, but may not be able to take it forever and still need to work on the natural ways to deal with the side effects and/or the episodes you continue to have, some from the drug itself. Remember, this PPN Support Group was designed and created for those of us who cannot tolerate the drugs or most drugs....this issue is still not up for debate here.)

Another important point to know about this testing is that it is very limited...only CN4A, CACNA1S, and KCNJ2 will be tested for...leaving out a significant amount of the actual forms that have been discovered so far. This means that it is biased and limited. Up until now only about 50% of the forms of PP have been discovered....so this means that a person has a very slim chance of this testing revealing a form of PP!!

Once you do the testing and the results are negative, the doctors who do not understand this information will then declare that you do not have PP and/or the 'conversion disorder' diagnosis usually follows. So if you have a 'clinical' diagnosis, based on your symptoms, it is best to stick with it and avoid this testing or any other DNA testing (they are all limited and biased)...rather than to risk losing your diagnosis. This has happened to many of our members.

This PPN group is a Support, Education and 'Advocacy' group. This means, besides providing support and sharing information, we also do what we can to keep you safe in all ways. Therefore we advocate for and discuss only all natural ways to manage your symptoms. We cannot advocate for anyone to safely take any drugs, including the carbonic anhydrase inhibitors with what we know about them and what we understand about PP (a mineral metabolic disorder). Nor do we want to be held responsible legally for advocating for them here. We are not doctors nor do we have doctors associated with us, so we cannot discuss drugs in specifics (such as types or amounts, etc.) or tell anyone to take a drug. Please understand that. We can and do, however, provide the information for you to make informed decisions for yourself, which is what we are doing here.

Hopefully, you can see the complete picture now and after reading the following information I am sharing, before you make any decisions to follow through with this company.

I do not want to debate this..this is for informational purposes only...

http://investors.strongbridgebio.com/news-releases/news-release-details/strongbridge-biopharma-plc-launches-uncovering-periodic

Please read the following Blog Article with links to other Blog Articles and medically related articles discussing these drugs.

"New" Drug For Periodic Paralysis $163.80 For One 50mg Tablet!!

http://livingwithperiodicparalysis.blogspot.com/2015/09/new-drug-for-periodic-paralysis-16380_17.html

Hope And Living With Periodic Paralysis, A Chronic Illness

When asked the question, “What is something that encourages you to keep fighting, despite having, a chronic illness that left you hopeless?” I was eager to answer by telling my story.

In terms of my life with Andersen-Tawil Syndrome a form of Periodic Paralysis (PP), which is a very rare, debilitating metabolic chronic illness, many doctors, including the specialists, have told me that there is nothing they can do for me. I can take no medications, have no surgeries and I am in a gradually declining physical state. I lost all hope 12 years ago. I would be dead now if it were not for my husband, Calvin’s research and fight for the things that now keep me alive and are giving me a better quality of life. He found that preparing and feeding me a pH balanced diet with needed supplements, providing me with oxygen therapy, helping me to discover and avoid my triggers, sheltering me from stress, keeping me hydrated, monitoring my vitals and remaining optimistic brought me back from the brink of death and reduced my paralytic episodes from 4 or 5 full body attacks a day lasting several hours at a time to 1 or 2 less severe episodes every few months!

He had hope. He had a desire that things would turn out for the best. He was correct in what he did and how he did it and was optimistic that I would get better. He maintained hope that I would improve in all ways and the truth is that I did.

Since that time, because of his hope and optimism, we now have written four books and have created a forum to bring hope to others with Periodic Paralysis. We have a Support, Education and Advocacy Group, and several discussion groups. We have a blog with over 140 articles related to PP, a Facebook Page, and over 150 files filled with information to help others to manage their symptoms and improve the quality of their lives.

Although I remain in a continual gradual decline, due to several wrong diagnoses, improper treatments and wrong medications over 62 years, which all caused permanent damage, I know that most everyone else with Periodic Paralysis will not end up like me. I am encouraged and keep fighting for the members of our forum all around the world and those who will become our members in the future to provide them hope for a better quality of life through managing their symptoms with all-natural methods. I remain hopeful that those with all forms of Periodic Paralysis can follow the all-natural plan laid out in our books, improve their conditions and live a much more normal and productive life. I remain hopeful and optimistic because I see it happening every day to the people in our PPN Support Group and to those who are reading our books. We share our knowledge and experience and every day we see and hear about the lives being changed for those who are willing to make the lifestyle changes. It is not an easy path for us. We must walk a constant tightrope and remain totally balanced, but we do not give up hope. For these reasons, I create posters with the word “hope” and share them daily on our PPN Support Group and our PPN Facebook Page.



Until later...

Now providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 700 members worldwide!!!

We at the Periodic Paralysis Network are now providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 700 members worldwide!!!

The following are the services and features of our PPN forum:

PPN Website: www.periodicparalysisnetwork.com

PPN Books:

"Living With Periodic Paralysis: The Mystery Unraveled"

"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
Video about this Guide and Workbook:

 https://www.facebook.com/sqkhunter/videos/10153659957417014/

"A Bill Of Rights For Periodic Paralysis Patients"

"What Is Periodic Paralysis?: A Disease Like No Other"
Our books are found on

Amazon.com: 
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1

and

our PPN website:
http://www.periodicparalysisnetwork.com/books.htm

PPN Blog:
We have over 140 blog articles written about all aspects of Periodic Paralysis.The Blog was created to provide information to all of our members, as well as, family members, friends and medical professionals who want to know more about Periodic Paralysis.
http://livingwithperiodicparalysis.blogspot.com/

PPN Book Discussion Group:
We have a discussion board to discuss specifically the issues and aspects of Periodic Paralysis found in our books.

PPN Genealogy Discussion Group:
This group was designed for discussion and research into the genealogy of those families with Periodic Paralysis in the hopes of finding links and perhaps a new way to get a diagnosis.

PPNI Genetics Discussion and Research Group:
The Periodic Paralysis Network Inc. (PPNI) Genetics Discussion and Research Group is designed for discussion and research into the genetics of the many forms of Periodic Paralysis.

The PPN Learning Center and Workshop:
We have web cam or live video group sessions periodically for education, support and discussion. Please watch for announcements and invitations to RSVP.

Periodic Paralysis Caregivers:
The Periodic Paralysis Caregiver Group is designed to assist the caregivers of those individuals with Periodic Paralysis. This could include parents, children, siblings, friends, grandparents or anyone else who is responsible to care for anyone who has any form of Periodic Paralysis. This group is an extension of the Periodic Paralysis Support Group.

PP and Co-existing Conditions:
This group is designed for those who have Periodic Paralysis and other co-existing conditions. The PPN Support, Education and Advocacy Group is geared for discussions about Periodic Paralysis only.

PP Buddies (Support when in an emergency)
This 'PP Buddies Group' is designed for members of the PPN Support, Education and Advocacy Group. Anyone can join who may need help or assistance in the ER or in an emergency and anyone who would like to 'buddy with' or help them at those times. We do not want to see anyone who is frightened or new to PP, have to go through these experiences alone. Using IM, Chat, Skype or exchanging phone numbers ahead of time may be helpful.

PPN Website Facebook Page:
Our PPN Facebook Page is designed to share more general information and articles related to Periodic Paralysis, Chronic Illness and Invisible Illness. It is also designed to share with family members and friends to provide them with a better understanding about PP, chronic and invisible illness.
https://www.facebook.com/PeriodicParalysisNetwork

PPN Author's Page:
Fun posts shared relating to writing and reading books.
https://www.facebook.com/SusanQKnittleHunterauthor
Email: periodicparalysisnetwork@gmail.com

Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc

Twitter: https://twitter.com/NetPeriodic
(I am not good at Twitter..let me know if you would like to help with this.)

Periodic Paralysis World Awareness Day Page:
This page was created to bring awareness to the world about Periodic Paralysis. We have declared and observe 'Periodic Paralysis World Awareness Day' February 7th each year!
https://www.facebook.com/PPAwarenessDay/

Please check out our PPN Members World Map:
Let us know if you want to be added to our map!
http://www.multiplottr.com/?map_id=55083

Thank you all for your support
Calvin Hunter and Susan Q. Knittle-Hunter
Co-Founders, Co-Creators, Co-Managers

Periodic Paralysis Network, Inc.
Sequim, Washington U.S.A.

All rights reserved. copyright © 2013 Periodic Paralysis Network

RARE Champion of Hope Award

Hello All,

Yesterday I received a surprise in the mail. I received a letter and small gift from Global Genes, a leading global rare disease advocacy organization. I had been nominated for being deserving of recognition of extraordinary efforts in rare disease (Periodic Paralysis)!! I did not win the RARE Champion of Hope award but I was recognized with a token (a book mark) as a 2017 nominee.

I want to thank whoever it was that nominated me. Thank you so much. I was very surprised and humbled by this.

It was great to have AWARENESS brought to Periodic Paralysis!!!

List of nominees:
www.globalgenes.org/2017nominees/

List of honorees:
www.globalgenes.org/2017rarechampionsofhope/