The role genetic testing plays in diagnosing PPP -- a LIVE Webinar with Dr. Cannon
We are very proud to announce a new webinar conducted by Dr. Cannon called "The Role Genetic Testing Plays in Diagnosing PPP".
We invite you to be part of this important conversation so that you or a loved one familiar with this condition can learn about the benefits of this practice to improve their quality of life.
#GeneticTesting #PeriodicParalysis #TemporaryParalized #PPA
Periodic Paralysis is an extremely rare disease and you may have a lot of questions, a great resource to help find answers can be found at the PPA website at www.periodicparalysis.org
We'd love to hear from you. Comment below on your experience with PP or with questions about the condition.
You can also donate at
www.periodicparalysis.org/donate
Your donation will help with Dr. Cannon's genetic research or a list of other extremely helpful options. The great thing is you can decide how you want your donation to be used.
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#PPA #NotFaking #paralyzed
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Пікірлер: 11
Thank you just came into this valuable information
thank you.
@PeriodicParalysisAssociation
9 ай бұрын
You're welcome!
Many thanks to Dr Cannon for giving us a good perspective on genetic testing of periodic paralysis and earlier Prof. Horn from Germany had helped me by identifying a mutation in SCN4A gene for my HyperPP condition.
@PeriodicParalysisAssociation
2 жыл бұрын
Thank you for sharing and for your kind regards for Dr. Cannon.
I am clinically diagnosed with SCN4A gene, and have the periodic paralysis variant. How rare is this? It took 30 years to get a diagnosis around 4 years ago, and I still feel I don’t know much about it. I do have good support from Queens Square London.
@PeriodicParalysisAssociation
2 жыл бұрын
It is currently believed that 1 in 100,000.00 people have PPP. You can learn more about this condition from our other episodes. We have medical and patient story episodes that might be helpful to you gathering a better understanding of this condition.
Hi. Shooting a long shot here. 23 years old. For a little over a year, i have suffered from 4 attack, where i suddenly get numb/paralyzed on my right side of my body. It goes from 0-100 in around 10 seconds. With my first attack, my symptoms lasts 3,5 months. Since then, all of my other attacks have lasted for around 2-4 weeks. With my attacks come numbness/paralasis, trouble speaking/mumbling, nausea and extreme fatique.. When i stand up for 1-2 minutes, my right srm will then turn blue, stiff and get white spots. No doctor seems to know what to do.. It is affecting my life, and im scared every day.. - from Josephine From Denmark
@PeriodicParalysisAssociation
Жыл бұрын
Josephine, we are sorry to hear that you are struggling. If you are an American citizen, there is a no cost genetic test your doctor can request for you that may provide you some answers. Here is the link www.invitae.com/en/uncoveringperiodicparalysis/ If you have any questions, contact us through Ask an Experts on our website. Here is the link periodicparalysis.org/ask-the-experts-disclaimer/
this was very informative - thanks so much for sharing! will the links that were shared amongst participants in the live chat be shared in the description here or in the comments section? :)
@PeriodicParalysisAssociation
2 жыл бұрын
You are very welcome. We are glad that you found this webinar helpful. Here is the link for the genetic testing program. www.invitae.com/en/uncoveringperiodicparalysis/ Here is the link to the database. www.ncbi.nlm.nih.gov/clinvar/