The number of people who have HNPP is still uncertain. Researchers now believe that HNPP is much more common than once thought. In fact, HNPP may be as common as CMT which affects approximately 20-40 in 100,000 people or 1 in 2500 to 5000. This estimate is based on the theory that the genetic problem that causes a deletion (HNPP) should happen as frequently as a duplication (CMT). However, physicians are currently only seeing about 1 person with HNPP for every 10 people with CMT. This means that if HNPP is as common as CMT, then 90% of people with HNPP are either undiagnosed or incorrectly diagnosed.
It is estimated that 150,000 people, in the United States alone, have CMT. Based on the estimates above one could conclude that 15,000 people have already been diagnosed. Unfortunately it is still too early to conclude this. The numbers just are not known and are most likely much smaller than this.
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