(Part 2 of 2) Overcoming Two Rare Diseases - EDS (Ehlers-Danlos Syndrome) & PP (Periodic Paralysis)

Paul continues his story of battling two rare diseases - Ehlers-Danlos Syndrome and Periodic Paralysis. Both conditions have their own set of challenges; but Paul and his Mom persevere by finding the PPA and it's conferences where they learn of others with the same condition and tools to help Paul's quality of life. This is Part 2 or 2 of Paul's story, you can watch Part 1 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

[@janeshipley6993]

just stunning. paul and mom, the drive that you both have is wonderful. i wish you both the very best.

[@PeriodicParalysisAssociation]

Thank you so much!

[@Roosmari2]

Thank you for this. I believe I have both too. During this diagnostic process, doctors have a hard time coming to grips with the statistically unlikely anomaly of having two rare diseases at the same time. Is there anywhere that I can get more info on EDS plus Hyperkk? Thank you again for these videos. Learning so much. And so comforted by the stories. Brave people enabling others.

[@PeriodicParalysisAssociation]

Roosmari, we are so glad that you enjoyed this video. Unfortunately, at this time, there is not a lot of information out there about the two combined in one person. In this weeks video, Dr. Cannon talked about why some may have both EDS and PP diagnosis/symptoms. Here is a link to that video. I hope you find it helpful. kzbin.info/www/bejne/lYbIp4KQnJpjndk

[@Roosmari2]

@@PeriodicParalysisAssociation thank you. At least it is something that I can show my neuro 😊

[@FolkertVeenstra]

Roosmari, one of neuromuscular specialists has in the past mentioned to me that she has seen more often EDS together with muscle diseases, including periodic paralysis. So it is more of the less recognised that there are a reasonable amount of patients who have got both.

[@melissarichards4716]

Me to Paul! I'm in college, it's a slow process for me. I don't know if I can make it through college and have enough time to work before I have to retire. But, STILL TRYING!

[@PeriodicParalysisAssociation]

Melissa, don't give up, keep trying. Hopefully when you get the proper diagnosis and the treatment will help you reach your goals.

[@melissarichards4716]

@@PeriodicParalysisAssociation Slowly but surely!

[@jennyhorner]

Is it possible to get in touch with Paul? I think I get 2 types of paralysis and I get passed around doctors because not everything is explained by one diagnosis.

[@doveleboeuf6625]

My sister has Ehlers-Danlos, lupus, osteoporosis, plus a fungus growing on her brain. But, she has the type of Ehlers-Danlos she has, so she can't have any surgeries because she would bleed to death. There is 4 types and the one she has effects her veins. 1 in 150,000 ppl have. So no one knows what the fungus is!!! She suffers alot.

[@PeriodicParalysisAssociation]

Dove, thank you for sharing your sister's story. We are sorry to hear that your sister struggles so much with her health. Having a rare disease is extremely challenging due to the limited resources available for treatment and research. She is lucky to have you as her advocate.