“I’ve been recently diagnosed with a rare inherited condition called “Periodic Paralysis”. For the past 15 months, I’ve been to several physicians with different specialties who either didn’t know what was going on or misdiagnosed me with other conditions. In May 2017 I was finally diagnosed with Periodic Paralysis (PP).
The norm in PP is that the potassium (a mineral found in our body) levels either drop below normal range or rise above it. In my case, the potassium level stays within normal range, which makes my case even more complicated.
My attacks occur almost on a daily basis, each one lasting on average 3 hours. During the attack, I cannot move my arms or legs and I cannot move my neck or hold my head up. My speech gets slurred and can only say a few words if possible; otherwise, I only answer yes/no questions with my eyes. Recently I’ve had trouble breathing during my attacks. This has lead to not being able to breathe for around 10 seconds, and then taking in a breath and holding it in for around 15 seconds then exhaling and so on. This is all due to temporary paralysis in the breathing muscles and throat. I sometimes lose my voice as well, due to paralysis of my vocal cords.
Moreover, the doctor has diagnosed me with “Oromandibular dystonia” which causes my jaw to stay open or closed with the inability to swallow and the possibility of choking.
There is no cure to PP, but some drugs that can help manage the severity and frequency of the attacks. In Jordan, we have a drug called “Acetazolamide” which usually helps patients with PP, but in my case, it didn’t make any difference, so my neurologist suggested getting the newly FDA approved the drug called “Keveyis” from the US, as it is my only hope right now. However, the drug is only distributed in the US and the market price for it is quite high, around $4,000 per bottle. I would need at least 7 bottles per year according to my doctors.”
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