Coalition of PRP Parents & Kids

From the editor…

Every so often I lament the fact that after (or in spite of) six years I have been unable to create or inspire a community of PRP parents within the PRP Facebook Community. That doesn’t stop me from raising the issue again in hopes that a Coalition of PRP Parents & Kids might evolve. So here I go again.

The PRP Juvenile Onset Community

There is a limit to what we know about the PRP Juvenile Onset Community, a subset of the PRP Community Database. Over the past six years the PRP Community Database has been evolving. Data gathering began in 2013 with the methodical review of over 29,000 email messages shared by members of the PRP Support Group during the period November 1997 and April 2014. Core data was “harvested” and entered into a secure and confidential database. The initial data included:

✽ Name of patient or caregiver

✽ Email address

✽ Location

✽ Onset date

✽ Onset age

✽ Misdiagnoses

✽ Biopsy history

✽ Diagnosis date

✽ Name of the dermatologist diagnosing PRP

✽ Name of the dermatologist treating PRP

✽ Type of Onset: Adult versus Juvenile

✽ Current status (Remission Date if in remission)

PRP Parents and Kids

The consensus among dermatologists is that 40% of all PRP cases are juvenile onset. Let’s take a closer look at the three types of Juvenile Onset PRP.

Classical Juvenile Onset PRP (Type 3)

✽ Usually occurs between the ages of 5 and 10
✽ Accounts for about 10 percent of all cases of PRP
✽ Remission can occur sooner than Classic Adult Onset, Type 1
✽ Average duration of Type 3 is one year
✽ Odds: One in 4 million

Circumscribed Juvenile Onset PRP (Type 4)

✽ Occurs in pre-pubertal children
✽ Usually confined to palms, soles, knees and elbows
✽ Accounts for about 25 percent of all cases of PRP
✽ Occurs in pre-pubertal children (age less than 14)
✽ Not a long-term affliction
✽ Odds: One in 1.6 million

Atypical Juvenile Onset PRP (Type 5)

✽ Occurs at birth or early in childhood, sometimes inherited
✽ Accounts for about five percent of all cases of PRP
✽ Most cases of “familial PRP” belong to this group.
✽ Runs a chronic, long-term duration
✽ Odds: One in 8 million.

What do we actually know?

The PRP Community Database has identified 1,995 PRP patients that are “trackable”. By “trackable” we mean that they fall into one or more of the following categories:

✽ Member of the PRP Facebook Support Group: 1,628
✽ Valid email address with no Facebook affiliation: 367

When it comes to PRP patients who have been diagnosed with Juvenile Onset PRP (onset age less than 18), the number drops dramatically to 186. However, there is a glimmer of hope in the fact that 1,027 PRP patients in the PRP Community Database have yet to indicate whether they are Adult Onset or Juvenile Onset. There may be more “wee ones” already in the database. and more to be found. Here is some of what we know about PRP Parents and Kids:

✽ BY AFFILIATION:

❏ 159 are PRP Facebookers,
❏ 27 are not, but have valid email addresses

✽ BY AGE —

❏ Less than 1: 29
❏ 1 to less than 2: 8
❏ 2 to less than 3: 17
❏ 3 to less than 4: 25
❏ 4 to less than 5: 13
❏ 5 to less than 6: 15
❏ 6 to less than 7: 7
❏ 7 to less than 8: 10
❏ 8 to less than 9: 9
❏ 9 to less than 10: 9
❏ !0 to less than 11: 2
❏ 11 to less than 12: 6|
❏ 12 to less than 13: 4
❏ 13 to less than 18: 32

✽ BY LOCATION

❏ USA: 86
❏ International: 92
❏ Missing: 8

What is the Path Forward for the PRP Juvenile Onset Community?

Your guess is as good as mine.

✽ A PRP Juvenile Onset Survey?
✽ A Video Conference?
✽ Formation of a PRP Parent Coalition?
✽ Outreach to Society for Pediatric Dermatology
✽ Outreach to teaching hospitals with Dermatology Departments

Paraphrasing the idiom “The ball is in your court”, let me say, “The ball is now in 186 courts.

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