How do PRP patients refer to other PRP patients?

01.01.02  How do PRP patients refer to other PRP patients?

Within the PRP community their are some — let’s call them the “old guard” — who were members of the PRP Support Group. They like the moniker “Pretty Red People”. Just a tick too cutsie for some.

There are many more within the PRP Facebook community who have adopted a modification of the “PRP” acronym that qualifies as JARGON, a special language belonging exclusively to a group. These folks refer to PRP patients as PRPers. There are two problems with this option.

If you are talking to a health care professional and refer to a fellow PRP patients as a PRPer, you will earn a blank stare of profound befuddlement. That’s the problem with jargon.

As a public relations (PR) professional for several decades, Bill McCue was initially taken aback by the use of “PRPers”. In his Mind’s Eye — or perhaps his Mind’s Ear — he heard PR pee-ers. That would be a PR professional with a urinary condition. Oh my.

As a matter of style, clarity and convenience, the PRP Survival Guide refers to PRP patients.

How is pityriasis rubra pilaris pronounced?

This is not as stupid question as it might sound. When a dermatologist confirms the diagnosis as “pityriasis rubra pilaris or PRP” we too often hear only the acronym “PRP”.  That three-letter acronym becomes problematic when we search Yahoo or Google for PRP only to discover that Platelet-Rich Plasma is the only game in town

We learn the proper spelling from the paperwork we bring home from the dermatology clinic along with unanswered questions and the repetition of those 22 letters when we search Yahoo and Google.

✽   pityriasis — any of various skin diseases marked by the shedding of bran like scales of epidermis.

✽  rubra — red

✽  pilaris — pertaining to the hair follicle

For some, however, the proper pronunciation of “pityriasis rubra pilaris” is ellusive.

For the most part, everyone you know — family, friends, co-workers — will defer to the way you pronounce pityriasis rubra pilaris whether your pronunciation is correct or not. The fact is, even dermatologists don’t seem to agree. Still concerned? Go to Try howjsay.com and listen

I have a very VERY rare skin disease that is NOT contagious. It’s called PRP which  stands for …

pity-RYE-a-sis ROO-bra pill-LAR-is

pity-REE-a-sis ROO-bra pill-LAR-is

pity-RYE-a-sis ROO-bra pill-LAIR-is

pity-REE-a-sis ROO-bra pill-LAIR-is

Whatever pronunciation you use, say it with confidence. Say it with authority. Your audience — whether a family member, friend, co-worker, employer, teacher or school administrator is predisposed to consider you the subject matter expert. The fact is, if you aren’t now, you will be soon.

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What is pityriasis rubra pilaris (PRP)?

Pityriasis rubra pilaris (PRP) is a group of rare skin disorders that cause inflammation and shedding of the skin. Typically, PRP appears first as a small spot somewhere on the body and then spreads elsewhere. It will impact different parts of the body in different ways for unpredictable periods of time. PRP patients and their caregivers quickly learn that every case of PRP is unique.

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NEED MORE?

1.  Pityriasis rubra pilaris (PRP) is the name given to a group of rare skin disorders that present with reddish-orange coloured scaling patches with well-defined borders. They may cover the entire body or just parts of the body such as the elbows and knees, palms and soles. Source: DermNet New Zealand. See: www.dermnetnz.org/topics/pityriasis-rubra-pilaris/

2.  Pityriasis rubra pilaris (PRP) is a chronic papulosquamous disorder of unknown etiology characterized by reddish orange scaly plaques, palmoplantar keratoderma, and keratotic follicular papules. The disease may progress to erythroderma with distinct areas of uninvolved skin, the so-called islands of sparing. Source: Medscape.com. See: http://reference.medscape.com/article/1107742-overview

3.  Pityriasis rubra pilaris (PRP) is a rare skin issue. It causes constant inflammation and shedding of the skin. PRP can affect parts of your body or your entire body. The disorder may start in childhood or adulthood. It affects males and females equally. Source: Healthline.com. See: http://www.healthline.com/health/pityriasis-rubra-pilaris#Introduction1

4.  Pityriasis rubra pilaris (PRP) refers to a group of skin conditions that cause constant inflammation and scaling of the skin. Affected people have reddish-orange colored patches; they may occur everywhere on the body or only on certain areas. There are several types of PRP, which are classified based on age of onset, body areas affected, and whether other associated conditions are present. PRP is usually sporadic (occurring randomly) but some forms may be inherited. Source: Genetic and Rare Disease Information Center, See:  https://rarediseases.info.nih.gov/diseases/7401/pityriasis-rubra-pilaris

5.  Pityriasis rubra pilaris (PRP) is a chronic skin disorder that is possibly caused by an inherited metabolic defect. Initially, the disorder is characterized by elevated spots (papules) on the skin. These spots grow and become connected, producing red plaques over large areas. Source: National Organization of Rare Disorders. See: https://rarediseases.org/rare-diseases/pityriasis-rubra-pilaris/

6.  Pityriasis rubra pilaris (PRP) is a rare condition that is often initially mistaken for another skin disorder, usually psoriasis. PRP is not really a single condition, but rather a group of unusual eruptions that cause red scaly patches containing dry plugged pores. It may cover the entire body, or just the elbows and knees. Source: American Osteopathic College of Dermatology. See: http://www.aocd.org/?page=PityriasisRubraPil

7.  Pityriasis rubra pilaris is a rare skin disorder that causes constant inflammation and scaling (exfoliation) of the skin. Source: MedlinePlus. See: https://medlineplus.gov/ency/article/001471.htm

8.  Pityriasis rubra pilaris (PRP) is a rare chronic disorder that causes hyperkeratotic yellowing of the skin, including the trunk, extremities, and, particularly, the palms and soles. Red follicular papules typically merge to form red-orange scaling plaques and confluent areas of erythema with islands of normal skin between lesions. Source: Merck Manuals: See: http://www.merckmanuals.com/professional/dermatologic-disorders/psoriasis-and-scaling-diseases/pityriasis-rubra-pilaris

9. Pityriasis rubra pilaris is the name given to a group of uncommon skin disorders. The name means scaling (pityriasis), redness (rubra) and involvement of the hair follicles (pilaris). Source: British Association of Dermatolologists. See: http://www.bad.org.uk/shared/get-file.ashx?id=116&itemtype=document

How would you define your version of PRP to a member of your family or a friend, co-worker, employer, teacher of school administrator? What do you want to share?

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