My Chronic Rare Disease Journey | Cienna's Story | A Rare Adventure EP08

Cieanna struggles with a multitude of rare symptoms in which she is trying to determine which and how many chronic rare diseases she has. It's a constant struggle to figure out this health puzzle, but she has found a way to spread her story to others through social media and, in the process, has found hope and activism.
#PeriodicParalysis #ChronicDisease #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.periodicpa...
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.periodicpa...
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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#MyLife #misdiagnosed #diagnosed #PeriodicParalysisAssociation #NotFaking #paralyzed #PPAttack #RareDisease #weakmuscles #chronicraredisease

[@alishamurdock3796]

You are a sweetheart. 🌺

[@deborahpalmer6662]

It sounds like the connection between these conditions could be the connective tissue disorder Ehler's Danlos

[@PeriodicParalysisAssociation]

Thank you for your comment. We hope you continue to enjoy our episodes.

[@theautlaw]

I was going to come on here and say EDS as well and EDS often goes hand in hand with neurodivergence, specifically ADHD and autism. I think I may have periodic paralysis. I also have MCASS and pots and I'm not sure about narcolepsy. We don't think so at this point but I wasn't able to complete my sleep test but based on what I did complete they said probably not. I have host of other things as well. Not all of them serious. But I'm 52 and I've been waiting 30 years to find out why I collapse.

[@asterx_obelix653]

I don’t think it is reasonable to diagnose someone’s condition online. It only spreads fear.

[@theautlaw]

@@asterx_obelix653 no one is diagnosing. We are making suggestions. We can't diagnose anyway. Why say that?