Familial Periodic Paralysis & Congenital Myasthenic Syndrome | A Rare Adventure | Jeanette's Story
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- เผยแพร่เมื่อ 11 ก.ค. 2024
- Meet Jeanette. She is living with a rare disease called Periodic Paralysis. Jeanette is intriguing because she has two rare diseases making her symptoms and diagnosis extremely rare and difficult. The rare diseases are Familial Hypokalemic Periodic Paralysis and Congenital Myasthenic Syndrome.
#PeriodicParalysis #DayInTheLife #ARareAdventure
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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#CongenitalMyasthenicSyndrome #MyLife #misdiagnosed #diagnosed #PPA #PeriodicParalysisAssociation #NotFaking #paralyzed #PPAttack #PPA #PMC #HypoPP #HyperPP #ParamyotoniaCongenita #FamilialPP
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Thanks for sharing their story guys:)
Our pleasure!
I’m really curious on the antihistamine connection and what that means - MCAS?
Idk what it means but I take benedryl and a lot of the time I pull out of an episode. Docs don't understand bc it usually makes people sleepy.
Deanna, Myasthenia gravis can have over lapping symptoms with PP but the treatment is different. If you have not had a genetic test yet I would recommend starting there to get a better understanding of what your diagnosis is so you can start the correct treatment.
Angel, Myasthenia Gravis and PP can have over lapping symptoms but the treatments are different. You may want to look into Myasthenia Gravis as a possible diagnosis. You could also have both like Jeanette and need treatment for both.
I also was diagnosed with genetics/SFEMG...periodic paralysis/ silent muscles and congenital myasthenic syndrome. I am currentpy taking Firdapse and it has improved my life greatly. If anyone can give me more info please reach out. Thank you
Jen, thank you for your comment. If you have any questions on Periodic Paralysis, please feel free to go to our website. Here is a link for Ask an Expert. periodicparalysis.org/ask-the-experts-disclaimer/
Hi Jenny- I wonder if all of us with this combo could make a group or something. Beside Jenette, you are one of about 5 people I have met with this and no known gene defect.
Hi Jenette. I have the same combination. Wonder if we could come in contact? I have been a member of the Periodic Paralysis Organisation siden 2013, and I have the same combination as you.
Tammy, we did get permission from Jenette to share her contact info with you. Please contact us through this link so that we can share that with you. periodicparalysis.org/contact/
@@PeriodicParalysisAssociation cannot believe I did not see this a year ago-- I will contact right away
@@PeriodicParalysisAssociation I cannot log in for some reason- have sent many messages- does the PP no longer have a telephone number or email? I could not fill out the contact form as it did not work- even tried different browsers. No luck
Jenette can you contact me directly? I cannot get ahold of the PP organistion. If it is ok for you- maybe I can send you a message here, or on facebook or email?
Tammy,
Jenette would love to speak to you directly.
Please email Monica on the link provided to you below. She will be sure to forward your email to Jenette. periodicparalysis.org/about-the-periodic-paralysis-association/