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
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?✽ 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.