Overcoming Two Rare Diseases - EDS (Ehlers-Danlos Syndrome) & PP (Periodic Paralysis)

Meet Paul. A young man who is battling and overcoming great odds living with two rare diseases - Ehlers-Danlos Syndrome and Periodic Paralysis. Both conditions have their own set of challenges, but watch as Paul and his mom share the struggles of daily life trying to figure out which condition affects him in various and extreme ways and their journey of discovering a diagnosis. This is Part 1 or 2 of Paul's story, you can watch Part 2 here [URL to come].
#PeriodicParalysis #EDS #RareDisease
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.
For more information on Strongbridge Biopharma®, please visit: www.strongbrid....
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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#PPA #paralyzed #Ehlers-Danlos #Diagnosis #GeneticTesting #ARareAdventure

[@Eloise_Please]

Thank you for making these videos, as someone with multiple rare conditions including EDS and some kind of paralysis that comes and goes, I really appreciate this and want to learn even if it's not what I've got. Your videos are really informative and personal and that's great!

[@PeriodicParalysisAssociation]

Thank you for your kind remarks. Please visit our website at www.periodicparalysis.org

[@shannongreenwell1278]

I have EDS + Epilepsy

[@PeriodicParalysisAssociation]

We hope you enjoyed Paul's story and thank you for sharing about your challenges. We hope you are able to manage them well.

[@jwilleseries7764]

How old where you when you got an EDS Diagnosis?

[@GoldNGhostsParanormal]

Is there a duplication on chromosome 22.33 per chance? I have hEDS and PP plus a heap of other challenges. I was dx in 1997. Thank you for helping educate folks about this. :)

[@alishamurdock3796]

I’m a (10yr) member of the PPA. Is there a way for Paul to DM me? I’ve recently been dealing with a neck pain/paralysis connection that I’ve been trying to get answers for. I’ve been to pain specialists and a neurosurgeon to get an understanding of how my neck issues relate to my recurring paralysis episodes. It’s gotten so bad that I’ve been scheduled for a steroid injection this Thursday to help reduce pain and weakness episodes. I’d love to speak to Paul to share experiences. Thanks!

[@PeriodicParalysisAssociation]

Alisha, I will try to connect you to Paul if you send me your email and phone at [e-mail]