Rare Disease Advocate Shares Family Story | A Rare Adventure EP 06
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- เผยแพร่เมื่อ 4 ส.ค. 2024
- This is Teresa. She has Hypokalemic Periodic Paralysis, a rare disease that renders a person paralyzed for long episodes of time for a variety of different reasons. She tells how she has adapted to her rare disease over the years as well as other topics on her blog at findingyourself.blog/
#Advocate #PeriodicParalysis #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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#DayInTheLife #MyLife #misdiagnosed #diagnosed #PPA #PeriodicParalysisAssociation #NotFaking #paralyzed #PPAttack #PPA #PMC #HypoPP #HyperPP #RareDisease
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Had a edible last night and ate way too many carbs I had full paraylsis on another occasion after doing at was well. My wife thought I was full of shit making things up .. Thinking back there have been quite a few times where I've experienced lower body weakness and I never seemed to recover well after workouts. I used to think it was some weird reaction to canabis but it's happen without canabis injection although not as severe. I'm hoping to get an official diagnosis
We have an Ask the Experts page designed exactly for situations like this. If you submit a question filled out with your history and symptoms then an expert in parodic paralysis will give you their take on if the symptoms sound like PP or not.
periodicparalysis.org/ask-the-experts-disclaimer/
Very encouraging. Can you DM me the doctor’s office info?
I’m struggling here is Atlanta, Ga. There is no help for me here. 😔
…Also, I’m on two types of blood pressure medicine; amlodipine and propranolol. Are either/both of these potassium-wasting?
Alisha, I would recommend you visiting our website to see if you have a recommend doctor near you. Here is the link th-cam.com/users/redirect?q=https%3A%2F%2Fperiodicparalysis.org%2Ffind-a-doctor-disclaimer%2F&redir_token=QUFFLUhqbk1CakU1TGpDaFI2ZllVSFVMMkZBZmIzWVYwQXxBQ3Jtc0trSjduaURwRHNQTkdYNlB5Y2pNWXMzeWFVNE5uSVlJVlk1bXZEQ3d1dXUzQlF1aW9TYXhSQ3lxbkJYRmlzTTFWVFpCS1kwVFoxZ2JDRk1sdVFQTktOMmpYVldvNHpObG5qVEN0SWpmNkFPVHptUmVyOA%3D%3D&event=comments&stzid=Ugx2j0OnFtHSMAt5oEl4AaABAg.9OZQX2oBbPm9ObmXDL2ZD4&html_redirect=1.
Also, all medical and medication questions have to go through our "Ask an expert" on our website. I have attached the link for you. periodicparalysis.org/ask-the-experts-disclaimer/ .
I hope this information is helpful to you.
I drink coconut water rather then taking suppliments. The potassium suppliments pills I tried taking just didnt seem to work as well. But I keep hearing of all these other options, I'm curious do you guys have a suggested potassium supliment or drink?
Hi! I'm not a doctor so this isn't medical advice, just my personal experience. I've gone through pretty much everything, potassium supplements in pill form, ER or immediate, have done nothing for me. There are various forms of other delivery systems. The best for me by far are these tablets that you put in water and they fizz for a while. Mine are called Klor-Con EF, Bicarbonate and Citrate 25 mEq. They are prescription only.
@@chucklebutt4470 oh! I keep seeing this written on threads and i think it was mentioned in a video but Ive never seen them sold commercially so I was really unsure if maybe I fever dreamed thag idea into my brain. Thanks! I bet my doctor would be willing to let me try that if I asked, but I'll have to look it up. Thanks!
@@melissarichards4716 Oh, yeah they should be able to with little fuss. Some doctors are very concerned with potassium, rightfully so since if it's too high it's very dangerous, but the tablets are quite safe. Especially if you run low normally. Try to get the orange-flavored stuff lol. Good luck! Join the Facebook group!
@@chucklebutt4470 which facebook group!?😲
@@melissarichards4716 facebook.com/groups/HKPPNetwork/
It's invite only but you should be able to DM one of the admins on there!
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Thanks for watching.