PRP Survival Guide

PRP Survival Guide

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60-Second Table of Contents.

The goal of the 60-Second PRP Roadmap is to provide PRP patients, their caregivers and dermatologists an overview of the “predictably unpredictable” PRP journeys faced by the PRP global community.

The goal of the Peer Review Workbook is to facilitate feedback from PRP patients, PRP caregivers and PRP-savvy dermatologists recommended by their patients.

  • What’s missing or incomplete? I can add it.
  • What’s incorrect? I can fix it.
  • What’s confusing? I can make it make sence.

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TABLE OF CONTENTS

 
Memo to Peer Review Effort
 
Dedication
 
Introduction   
 
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. Google 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. Impairment to skin?
  3. Impairment to energy?
  4. Impairment to mobility?
  5. Impairment to dexterity?
  6. Impairment to vision?
  7. Impairment to hearing?
  8. Impairment to thermoregulation?
  9. Impairment to sleeping?
  10. Impairment to employment?
  11. Impairment to attending school?
  12. Impairment to socialization?
  13. Impairment 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. CaregiversCause of PRP
  9. Census, Global
  10. Challenges, PRP
  11. Clinic visits
  12. Closed Group
  13. Cohort
  14. Contagious
  15. COVID-19
  16. Cream vs. Ointment
  17. Cup o’ skin
  18. Curable
  19. Delete Button
  20. Depression
  21. Dermatologist
  22. Dermatopathologist
  23. Dexterity
  24. Diagnostic odyssey
  25. Diet, Anti-inflammatory
  26. Differential diagnosis
  27. Dowling Oration
  28. Duration
  29. Ear stuf
  30. Ebb & Flow
  31. Efficacy
  32. Energy & Fatigue
  33. Exercise and Physical Activity
  34. Eyes & Vision
  35. Face-to-face
  36. Feedback
  37. Find-a-Derm
  38. Fingernails
  39. Flaking & Shedding Flares
  40. Freebies
  41. Full Bloom
  42. Good Start
  43. Google, MD
  44. Hair Loss
  45. Happy Dance
  46. Healing Milestones
  47. History of our name
  48. Howling at the Moon
  49. Hijacking a post
  50. In My Humble Opinion
  51. Itch
  52. Land of Chat
  53. Land of Hope
  54. Land of Share
  55. Laundry
  56. Lip care
  57. Managing expectations
  58. Metaphor
  59. Mirror
  60. Mobility
  61. Nitrile gloves
  62. NORD PRP Report
  63. Odds
  64. Onset — the first sighting
  65. Pain
  66. Patient profiles
  67. Phases of PRP
  68. Pillars of Support
  69. Platelet-Rich Plasma
  70. Poking the Meta Bear
  71. Prednisone and the Duck
  72. Prevalence vs Incidence
  73. Privacy & PRP
  74. Progress & PRP
  75. PRP Awareness Day
  76. PRP Parents & Kids
  77. PRPer, PRP-er
  78. Remission
  79. Repurposing
  80. Roadside Emergency Kit
  81. Rude people
  82. Rule of Nine
  83. Rules of the Road
  84. Sauna Suits
  85. Scalp
  86. Showers & Baths
  87. Sharing is caring
  88. Short end of the stick
  89. Signs & Symptoms
  90. Slathering
  91. Sleep deprivation
  92. Stigmatization
  93. Stress & triggers
  94. Swollen legs & feet
  95. Sunlight
  96. Synonyms
  97. Swimming
  98. Tattoos & Body Art
  99. Take Command
  100. Translation Button
  101. Travel & Vacations
  102. Types of PRP
  103. Unicorns
  104. Vacuum cleaners
  105. Venting
  106. Weight gain/loss
  107. Workplace
  108. Why me?
  109. Why you?
  110. 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
Epilogue
Acknowledgements
 
Appendices

Appendix A:  2024 PRP Census

Appendix B: Coalition of PRP Parents & Kids

Appendix C:  New Member Orientation

Appendix D: Rare Disease Caregiving

Appendix E:  STANDING UP for your health: PRP Edition

Appendix F: Finding health information on the internet

Appendix G: Evaluating health information on the internet

Appendix H: Disability Claim Strategies

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