The following webpage provides an overview of what is important about each question presented on the BASIC webpage. These are the “takeaways” you should have you in your metaphorical toolbox when dealing with family, friends and even dermatologists. As your PRP journey continues, you will become a Subject Matter Expert (SME) when you want to or not.
10 Most Frequently Asked Questions
- What are the odds of getting PRP?
(a) One out of 400,000.
(b) There are nearly 600 rare skin disorders worldwide according the the Genetic and Rare Diseases Information Center, a program of the National Institutes of Health
(c) PRP is among the most rare. - Do we know what causes PRP?
(a) No
(b) Don’t confuse “trigger” for cause - Is there a cure for PRP?
(a) No
(b) Don’t confuse improvement with cure.
(c) Don’t confuse the cessation of symptoms with cure. The best we can say is “My PRP journey is over”. - What are the issues related to the diagnosis of PRP?
(a) PRP mimics more common skin disorders like psoriasis, and atopic dermatitis
(b) Dermatologists fail to instruct dermatopathologists to specifically look for PRP
(c) Dermatologist doesn’t biopsy the right area
(d) Patient doesn’t present enough PRP-specific symptoms, e.g., islands of sparing - How do PRP symptoms progress over the body?
(a) Every PRP journey is unique to the patient
(b) There is no standard progression
(c) A PRP journey is more like a roller coaster. - What are the basic treatment options for PRP?
(a) Retinoids
(b) Immunosuppressants
(c) Biologicals
(d) No meds - How does healing progress?
(a) Every PRP journey is unique to the patient
(b) There is no standard progression
(c) A PRP journey is more like watching paint drive.
(d) Healing is best viewed in the rear view mirror. - How long will my PRP journey last?
(a) Some say 3-5 years
(b) Some say 2-3 years
(c) Some have a chronic version that will last a lifetime
(d) Some are in it for the “long haul” or six-plus years - What is your PRP “Endgame“?
(a) Some say med free and symptom free|
(b) Some say symptom-free with meds
(c) Some say “manageable”
(d) Some say “I have my life back” - What does the parent of a PRP child need to know?
(a) There are 200-plus PRP parents who are members of the PRP Support Group
(b) PRP parents must share their insights and experiences
14 Other Questions Worth Asking
When you have digested the answers to the 10 Most Frequently Asked Questions, it’s time to dig a little deeper. The more you know about PRP from the patient perspective, the more effective you will be as a self-advocate.
- What resources are available to support PRP patients and caregivers?
(a) PRP Alliance
(b) PRP Support Group
(c) PRP Survival Guide
(d) PRP Global Database
(e) GlobalSkin
(f) National Organization of Rare Disorders
(g) Genetic and Rare Diseases Information Center How is pityriasis rubra pilaris pronounced?
(a) pity-RYE-a-sis ROO-bra pill-LAR-is
(b) pity-REE-a-sis ROO-bra pill-LAR-is
(c) pity-RYE-a-sis ROO-bra pill-LAIR-is
(d) pity-REE-a-sis ROO-bra pill-LAIR-is- What constitutes a rare disease?
(a) There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day.
(b) There are 597 rare skin diseases listed in the Genetic and Rare Diseases Information Center database,
(c) In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group.
(d) International definitions on rare diseases vary. For example, in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease
(e) The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases. PRP is lumped into the remaining 6,650 rare diseases. - Is PRP an autoimmune or auto-inflammatory disease?
(a) PRP is an auto-inflammatory isease, NOT autoimmune. - How do I find a PRP-savvy dermatologist?
(a) Ask questions
(b) Focus on teaching hospitals with larger dermatology departments
(c) As questions - What are the “Quality of Life” impacts of PRP?
(a) Physical impacts
(b) Psychological impacts
(c) Daily Living impacts
(d) Social impacts
(e) Financial impacts - What is the Rule of Nines?
(a) The front and back of the head and neck equal 9% of the body’s surface area.
(b) The front and back of each arm and hand equal 9% of the body’s surface area.
(c) The chest equals 9% and the stomach equals 9% of the body’s surface area.
(d) The upper back equals 9% and the lower back equals 9% of the body’s surface area.
(e) The front and back of each leg and foot equal 18% of the body’s surface area.
(f) The groin area equals 1% of the body’s surface area. - What is the PRP Global Community?
(a) PRP patients included in the PRP Global Database who have confirmed their location and provided a valid email address - What is the basic anatomy of skin?
(a) Epidermis, dermis, subcutaneous, galea, subgalea space, pericranium and carnium
(b) There are about 19 million skin cells in every inch of your body.
(c) Your body gets rid of 30,000 to 40,000 old skin cells every day! The skin you see now will be gone in about a month.
(d) The top 18 to 23 layers of your skin are made of dead cells. - What is the history of our name (PRP)?
(a) First PRP patient: James Shooter, 1828, St. Batholomew’s Hospital, London
(b) It took 61 years (1828 to 1889) for a progression of dermatologists in France for the name — pityriasis rubra pilaris — to be accepted by the medical community.
(c) While our PRP global community laments the snail’s pace at which PRP research progresses, we should remember that it took 61 years just to get the name right. - What is the significance of the Dowling Oration (circa 2006)?
(a) The Dowling Oration was delivered by Dr. Andrew Griffiths in Liverpool, England in March 2003 as he reflected on 35 years as a dermatologist.
(b) Griffiths set the prevalence rate for PRP at one in 400,000
(c) Griffiths identified five if the six types of PRP: Classical Adult Onset (Type 1), Atypical adult Onset (Type 2), Classical Juvenile Onset (Type 3), Circumscribed Juvenile Onset PRP (Type 4) and Atypical Juvenile Onset PRP (Type 5). - Is asking Dr. Google about PRP a “Fool’s Errand”?
(a) Google is fantastic to reach the PRP Support Group via the National Organization of Rare Disorders, the Genetic and Rare Disease Information Center, Medscape.com, DermNetNZ.com , the Australasian College of Dermatology and the British Association of Dermatology.
(b) Unfortunately, PRP-related searches in Google, Yahoo and Bing return information that is redundant, written for healthcare professionals and light on patient insights and experiences. - Where can I find an effective strategy for Self-Advocacy?
(a) GO TO the new Self-Advocacy section of the PRP Survival Guide. - What are the issues related to PRP Research?
(a) The PRP global community must establish as research cohort of 1,000 PRP patients willing to answer questions and participate in non-evasive research.
3 Rarely Asked Questions
There are questions PRP patients want to ask and questions PRP patients should ask. Consider this last group of questions to be extra credit.
- What is the value of being a Storyteller?
(a) When we tell our stories to dermatologists, family, friends, employers, coworkers and passersby, we build awareness - Is there a glossary of PRP Words & Jargon?
(a) Yes; CLICK HERE - How can I support the PRP global community?
(a) We can all agree that the PRP global community is a worthy cause. Over the past two months, donations from 132 PRP patients and caregivers have already been committed to:
(b) ongoing website hosting,
(c) expansion of content and improved search capabilities,
(d) ongoing email and survey support,
(e) annual domain registrations,
(f) ongoing database technology and support,
(g) ongoing efforts to facilitate research (PRP focus groups) and “Meet & Greet” gatherings.
GO TO: $20.25 Campaign