Is PRP contagious?


While PRP is not contagious, it is important to include the phrase “not contagious” early in any first-time explanation of we look the way we look.

When dealing with a passerby who stares at your red and flaking skin in the cereal aisle at a grocery store., you might consider the following strategy:

❉  Make eye contact
❉  Smile
❉  Now say something like: “I have a very rare skin disorder that is NOT contagious. It’s called PRP which stands for pityriasis rubra pilaris.”

Remember — it’s your grocery store too and Clean up on Aisle 4 don’t mean you.

Is PRP contagious?

Do we know what causes PRP?


Much to the frustration of the PRP community, the answer is “No”, although genetic factors, an abnormal immune response, or vitamin A deficiency may be involved.

Based on conversations within the PRP community, we can say with metaphysical certitude that PRP isn’t a punishment for misbehavior or forgetting to put the seat down on a toilet (loo in some parts of the world). There are thousands of perfectly wonderful people who have — or had — PRP. Moreover, there are many very bad people who don’t have it.

When asked, we can say: “The cause of PRP is not known. It’s a missing piece in our puzzle.”

NEED MORE?

1.  The cause of PRP is unknown. PRP is usually sporadic but in some forms it may be partially inherited. It may occur in any race, and males and females are equally affected.Source: DermNet New Zealand. See: www.dermnetnz.org/topics/pityriasis-rubra-pilaris/

2. The exact cause of PRP is unknown. PRP most often occurs for no clear reason. While some cases of PRP are inherited, most are not. Inherited PRP tends to be more severe. Source: Healthline.com. See: http://www.healthline.com/health/pityriasis-rubra-pilaris#Introduction1

3.  In most cases, pityriasis rubra pilaris (PRP) occurs sporadically for unknown reasons.  In a few families with the inherited form, familial PRP, the condition is caused by mutations in the CARD14 gene. This gene gives instructions for making a protein that turns on other proteins that regulate genes that control the body’s immune responses and inflammatory reactions. It also protects cells from certain signals that would otherwise cause them to self-destruct. The CARD14 protein is particularly abundant in the skin. Mutations in the gene can cause a person to have an abnormal inflammatory response. Researchers are trying to find out how these mutations cause the specific features of familial PRP. Source: Genetic and Rare Disease Information Center, See:  https://rarediseases.info.nih.gov/diseases/7401/pityriasis-rubra-pilaris

4. The specific underlying cause of PRP is unknown. Researchers indicate that the condition may be hereditary or acquired. In many patients, PRP appears to occur randomly for no known reason (sporadically). However, in some affected individuals, evidence suggests that the disorder may be inherited as an autosomal dominant trait. Human traits, including the classic genetic diseases, are the product of the interaction of two genes for that condition, one received from the father and one from the mother.

Dominant genetic disorders occur when only a single copy of an abnormal gene is necessary to cause a particular disease. The abnormal gene can be inherited from either parent or can be the result of a new mutation (gene change) in the affected individual. The risk of passing the abnormal gene from an affected parent to an offspring is 50% for each pregnancy. The risk is the same for males and females. In some individuals, the disorder is due to a spontaneous (de novo) genetic mutation that occurs in the egg or sperm cell. In such situations, the disorder is not inherited from the parents.

Some researchers suggest that PRP may result from abnormalities in vitamin A metabolism. (Metabolism refers to the chemical processes occurring in the body.) However, such research has not been definitive, necessitating further investigation. Source: National Organization of Rare Disorders. See: https://rarediseases.org/rare-diseases/pityriasis-rubra-pilaris/

Do we know what causes PRP?

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.

SG 01.01.01

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.

<><><><><><<><><><><><><><><><><><><><><><><><><><><>

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?

SG 01.01.00

We need your help to jumpstart 2018

It took 3 days and 16 people to raise $1,225 in October, just enough to pay for the Rare Skin Disease Referral Initiative’s  initial mailing of “advocacy packets” to 88 teaching hospitals in the U.S. Bravo to all. The PRP Alliance needs another group of PRP patients and caregivers to step up and support the most important projects and activities of 2018. The new goal is $3,600.

❋  Constant Contact (annual cost): $840

The PRP Alliance pays a fee for the technology we use to gather and process the Worldwide PRP Census as well as manage the create and distribution of emails 

  National Organization of Rare Disorders (annual dues): $50

NORD is one of the most important allies we have developed over the past four years. PRP patients and caregivers seeking information about PRP will find a 5,000-word PRP Report — a coverture of the PRP Alliance and NORD.

 Coalition of Skin Diseases (annual dues): $200

As a CSD member, the PRP Alliance has been represented at the American Academy of Dermatology Association’s Annual Conference in Washington DC. Travel and lodging are covered by the AADA, out-of-pocket expenses are reimbursed.

 Rare Disease Week on Capitol Hill: $2,010.

Rare Disease Week on Capitol Hill (February 25 to March 1, 2018) brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.  Learn More

Expenses include:

  airfare: $400  lodging: $1,260  transportation to/from events: $150 ►  miscellaneous: $200.

❋  ReadyTalk Video Conferencing: $500

The use of video conferencing will become  increasingly import during 2018. Unlike Webex and GoToMeeting, ReadyTalk requires now downloading of applications. Simply click an invitational link and you will be part of the gathering.

RESULTS AS OF FEBRUARY 5, 2018

Thanks to the 81 contributors who donated a total of $5,610. We surpassed the goal by $2,010. Donations are still being accepted.

✔︎    Jandina G (Portland, OR)
✔︎    Richard L (Lansdale, PA)
✔︎    Janice & Ernie F (Plover, WI)
✔︎    Jessica H (Stone Mountain, GA)
✔︎    Janet B (Forest Lake, MN)
✔︎    Carel R (Surrey, British Columbia, Canada)
✔︎    Cheri H (Omaha, NE)
✔︎    Frank G (Fairview, NC)
✔︎    Ronald O (Sharpsville, IN)
✔︎    Derek S (Otterville, Ontario, Canada
✔︎    John K (Weston, CT)
✔︎    Mike W (Park City, UT)
✔︎    Eve J (Byron Bay, NSW, Australia)
✔︎    Leslie L (Colorado Springs, CO)
✔︎    Vincent F (Cape Coral, FL)
✔︎    Sylvia C (Wayne, NJ)
✔︎    Susan O (Amesbury, MA)
✔︎    Chelsea B (Othello, WA)
✔︎    Helen M (Madison, WI)
✔︎    Phil S (Chester, England, UK)
✔︎    Anita R (Pearl, MS)
✔︎    Corrine P (Toronto, Ontario, Canada)
✔︎    Eric S (San Luis Obispo, CA)
✔︎    Wayne M (Kyabram, Victoria, Australia)
✔︎    Jerry R (Sausalito, CA)
✔︎    David H (Scottsdale, Tasmania, Australia),
✔︎    Suzanne M (LaPlata, MD)
✔︎    Paula M (Los Angeles County, CA)
✔︎    Debra W (Winston-Salem, NC)
✔︎    Martin W (Wolverhampton, England, UK)
✔︎    Vickie B (San Diego, CA)
✔︎    Sandi H (Turtle Creek, PA)
✔︎    Aziz T (Laurens, SC)
✔︎    Diane H (Minneapolis, MN)
✔︎    Donna S (Beaumont Hills, NSW, Australia)
✔︎    Diedre H (Houlma, LA)
✔︎    Tierney R (Virginia Beach, VA)
✔︎    Bill M (Plano, TX)
✔︎    Elaine A (Reno, NV)
✔︎    Sara K (Miami,FL)
✔︎    Cay B (Berthold, CO)
✔︎    Darcy L (Colorado Springs, CO)
✔︎    Cami S (San Jose, CA)
✔︎    Sharlene C (Australia)
✔︎    Linda L (Somerset, CA)
✔︎    Roberta K (Sicklerville, NJ)
✔︎    Deborah C (Royal Palm Beach, FL)
✔︎    Marion M (Dublin, Ireland)
✔︎    Jan & Malcolm T (Ringwood, NJ)
✔︎    Joan P (Portland, OR)
✔︎    Mark & Paul A (Boston, MA)
✔︎    Joyce G & Stephen T (location n/a)
✔︎    Daina B (West Sacramento, CA)
✔︎    Jeff S (Dayton, OH)
✔︎    Nicola G (Bannockburn, Otago, New Zealand)
✔︎    Curt H (Santa Clarita, CA)
✔︎    Mark A (Boston, MA)
✔︎    Dan M (Rutland, VT)
✔︎    Burt U (Kenedy, TX)
✔︎    Gary R (Port Perry, Ontario, Canada)
✔︎    Megan Q (Grants Pass, OR)
✔︎    Carol K (Plano, TX
✔︎    Holly B (Boerne, TX)
✔︎    Jeffrey D (Rockwall, TX)
✔︎    Erin M (Boulder, CO)
✔︎    Lindsay S (Charlotte, NC)
✔︎    Beau R (San Francisco, CA)
✔︎    Stewart L (Fareham, England, UK)
✔︎    Sherilene G (Lake Jackson, TX)
✔︎    Stacy K (Hampton, VA)
✔︎    Mary H (Novato, CA)
✔︎    Pat N (San Diego, CA)
✔︎    Gena H (Merced, CA)
✔︎    John M (Sequin, TX)
✔︎    Edward B (Pacifica, CA)
✔︎    Carol F (Allen, TX)
✔︎    Pat W (Fort Townsend, MD)
✔︎    Jerry & Jodeen M (Dickinson, ND
✔︎    Guy F (Scaggsville, MD)
✔︎    Veronica L (Melbourne, Victoria, Australia)

Click Here to donate to the 2017-18 PRP Worldwide Census effort