PRP Survival Guide

PRP Survival Guide

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Target Audience

While the 60-Second PRP Roadmap is written for three audiences of readers: PRP patients, PRP caregivers and dermatologists, the primary focus is on patients.

PRP patients are the travelers
  • PRP is a unique journey from onset to someplace else.
  • As PRP patients we have no control over the road ahead.
  • We are unwilling riders on a roller coaster that brings terror when we are most vulnerable.
PRP patients need not travel alone
  • We can travel with others who are willing to share what they have learned
  • The more we share, the more we all learn
  • The more we learn, the less we fear
PRP patients benefit from the experiences of other PRP patients.
  • We can lighten the burden placed on family members by sharing that burden with the PRP community
  • We can find emotional support from kindred spirits
  • We can minimize loneliness and feelings of isolation
  • We can find strategies with which to cope with pain, anxiety, stress, depression, and frustration
  • We can identify effective treatment options
  • We can benefit from the acceptance, understanding and empathy of the PRP community

TABLE OF CONTENTS (as of December 6, 2023)

 

Dedication
Preface   
Section One — First questions
  1. What is PRP?
  2. What constitutes a rare disease?
  3. What are the signs & symptoms of PRP?
  4. How does PRP progress?
  5. Is there a cure for PRP?.
  6. What are Healing Milestones?
  7. What are the metrics of PRP?
  8. What are the quality of life impacts of PRP
  9. Who came up with our name?
  10. How is PRP pronounced?
  11. Is asking Dr. Internet a “Fool’s Errand”?
  12. What should I know about skin?
  13. What should I say to family & friends?
  14. What words are important to know?
  15. The importance of Hope?
  16. Does anything good come from PRP?
Section Two — Diagnosing PRP
  1. Quality healthcare requires a timely diagnosis of PRP
  2. What is a PRP diagnostic odyssey?
  3. Why is PRP so difficult to diagnose?
  4. What if Sherlock Holmes was a dermatologist?
  5. What if Dr. Golden was Sherlock Holmes?
  6. What if my diagnosis is incorrect?
Section Three — Treating PRP
  1. What is the PRP treatment mantra?
  2. What is patient-centered care?
  3. Is there a standard PRP treatment?
  4. What are the PRP treatment options?
  5. What are possible referral option?
  6. What are the impacts on caregivers?
  7. How can I measure PRP coverage?
  8. How do I find a PRP dermatologist?
  9. Why is self-advocacy critical to PRP patients?
  10. What are the principles for PRP self-advocacy?
  11. PRP self-advocacy resolution
Section Four — PRP Impairments
  1. What is a PRP impairment?
  2. To skin?
  3. To energy?
  4. To mobility?
  5. To dexterity?
  6. To vision?
  7. To hearing?
  8. To thermoregulation?
  9. To sleeping?
  10. To employment?
  11. To attending school?
  12. To socialization?
  13. To financial stability?
  14. To mental wellness?
Section Five — PRP Glossary
  1. Advocacy, Self
  2. Alcohol Consumption
  3. Anatomy of Skin
  4. Autoinflammatory vs. Autoimmune
  5. Balderdash
  6. Befuddled
  7. Biopsies
  8. Caregivers
  9. Cause of PRP
  10. Census, Global
  11. Challenges, PRP
  12. Clinic visits
  13. Closed Group
  14. Cohort
  15. Contagious
  16. COVID-19
  17. Cream vs. Ointment
  18. Cup o’ skin
  19. Curable
  20. Delete Button
  21. Depression
  22. Dermatologist
  23. Dermatopathologist
  24. Dexterity
  25. Diagnostic odyssey
  26. Diet, Anti-inflammatory
  27. Differential diagnosis
  28. Dowling Oration
  29. Duration
  30. Ear stuf
  31. Ebb & Flow
  32. Efficacy
  33. Energy & Fatigue
  34. Exercise and Physical Activity
  35. Eyes & Vision
  36. Face-to-face
  37. Feedback
  38. Find-a-Derm
  39. Fingernails
  40. Flaking & Shedding
  41. Flares
  42. Freebies
  43. Full Bloom
  44. Good Start
  45. Google, MD
  46. Hair Loss
  47. Happy Dance
  48. Healing Milestones
  49. History of our name
  50. Howling at the Moon
  51. Hijacking a post
  52. In My Humble Opinion
  53. Itch
  54. Land of Chat
  55. Land of Hope
  56. Land of Share
  57. Laundry
  58. Lip care
  59. Managing expectations
  60. Metaphor
  61. Mirror
  62. Mobility
  63. Nitrile gloves
  64. NORD PRP Report
  65. Odds
  66. Onset — the first sighting
  67. Pain
  68. Patient profiles
  69. Phases of PRP
  70. Pillars of Support
  71. Platelet-Rich Plasma
  72. Poking the Meta Bear
  73. Prednisone and the Duck
  74. Prevalence vs Incidence
  75. Privacy & PRP
  76. Progress & PRP
  77. PRP Awareness Day
  78. PRP Parents & Kids
  79. PRPer, PRP-er
  80. Remission
  81. Repurposing
  82. Roadside Emergency Kit
  83. Rude people
  84. Rule of Nine
  85. Rules of the Road
  86. Sauna Suits
  87. Scalp
  88. Showers & Baths
  89. Sharing is caring
  90. Short end of the stick
  91. Signs & Symptoms
  92. Slathering
  93. Sleep deprivation
  94. Stigmatization
  95. Stress & triggers
  96. Swollen legs & feet
  97. Sunlight
  98. Synonyms
  99. Swimming
  100. Tattoos & Body Art
  101. Take Command
  102. Translation Button
  103. Travel & Vacations
  104. Types of PRP
  105. Unicorns
  106. Vacuum cleaners
  107. Venting
  108. Weight gain/loss
  109. Workplace
  110. Why me?
  111. Why you?
  112. Zits
Section Six — Patient Support
  1. In the beginning
  2. PRP Alliance
  3. PRP Global Database
  4. PRP Survival Guide
  5. PRP Support Group
  6. PRP Global Community
  7. PRP Research
  8. PRP & GlobalSkin
  9. PRP & GRIDD
Epilogue

The spot

Acknowledgments

The List (125 PRP patients/caregivers who financed the Peer Review Edition.

Appendicies

Appendix A: Guidelines for Peer Review

Appendix B: PRP Support Group Member Orientation

Appendix C: 2024 PRP Census

Appendix D: Global Demographics of PRP

Appendix E: Coalition of PRP Parents & Kids

Appendix F:  STANDING UP for your health: PRP Re-imagination

Appendix G: Importance of GRIDD

Appendix H: Rare Disease Caregiving Research— Executive Summary

Appendix I: Finding health information on the internet

Appendix J: Evaluating health information on the internet

Appendix K:   Disability Claim Strategies