How Many People in the World Have Periodic Paralysis? December 7, 2013

Hello All,

Someone asked me, not long ago, if I knew how many people worldwide have Periodic Paralysis. I did not have an answer so I had to research it. The following is my best "estimation" based on the information I was able to find.

Orphanet, a consortium of European partners, currently defines a condition rare when it affects 1 person per 2,000. They list Hypokalemic periodic paralysis as a "rare disease".

(Source – Orphanet)

Prevalence rate of Hypokalemic Periodic Paralysis: approx 1 in 100,000 or 0.00% or 2,720 people in USA [about data]

Prevalence Rate for Hyperkalemic periodic paralysis: approx 1 in 200,000 or 0.00% or 1,360 people in USA [about data]

Prevalence Rate for Andersen-Tawil Syndrome: approx 1 in 60,000,000 or 0.00% or 4 people in USA. Source statistic for calculation: "100 people have been reported with Andersen-Tawil syndrome worldwide, Genetics Home Reference"

According to this, in the United States there are 4,084 people with Periodic Paralysis. I assume documented, genetically confirmed cases.

But this does not account for those of us who are not genetically diagnosed and these numbers only account for the cases in the United States.

There are 7 billion people worldwide, so if I figured correctly:

7,000=Hypokalemic Periodic Paralysis

3,500=Hyperkalemic Periodic Paralysis

   100=Andersen-Tawil Syndrome

10,600=cases of documented, genetically diagnosed people in the world have Periodic Paralysis.

But about 40 to 50% of individuals with Periodic Paralysis have no known genetic mutation, so that number should be about double.

So my best calculation, based on the above information, is that 21,200 people worldwide have Periodic Paralysis!  This estimate is very conservative. However. I am sure it may actually be a much higher incidence due to misdiagnosis.

For instance, just this week, some people in our support group received the results of genetic testing. One woman believed she had Periodic Paralysis. Several of her family members were diagnosed with Fibromyalgia and were content with that diagnosis. Just to humor their relative, they also had genetic testing done. ALL of them turned out to have the same genetic mutation for a form of Periodic Paralysis.

 
This woman had been told two months ago, by the most prominent specialist in the world for Andersen-Tawil Syndrome in Rochester, New York, after traveling at great expense across the country, that she DID NOT have Periodic Paralysis.

Those three individuals would not have figured in the statistics, but now will be counted. This is just the tip of the iceberg!!!!! I believe that the number of individuals with Periodic Paralysis around the world is closer to 50,000 or even more.

It would seem that many people with Periodic Paralysis are misdiagnosed as having Fibromyalgia. At least 10 members of my family are diagnosed with Fibromyalgia. Most of them are in the process of trying to get diagnosed with Periodic Paralysis.

Until Later…