PRP — The Poem

by Greg Shalless

(PRP Onset January, 2008. Duration: Two years)

Pityriasis Rubra Pilaris
I don’t want to sound too alarmist,
But your skin turns bright red
And in layers is shed –
Who needs this kind of catharsis?

It happens when you’re quite mature
And you lose any sense of allure,
It will no doubt cause tears
And be with you for years,
For there is no known cause or a cure.

Fingers tingling and nails corroding,
Eyelids stinging and you are imploding,
Your “hot” body’s glowing,
Your dandruff is snowing
And your feet when in shoes are exploding.

Your hands feel like stiffened old leather,
But later on you won’t know whether
To be glad that soon it’ll
Crack up it’s so brittle,
But you try hard to keep it together.

Crispy skin simply falls off your feet
Like the flakes of a fine pastry treat
And the incessant itch
Is a right proper bitch
And your whole blood red body’s on heat.

It’s tough to explain what you’re feeling
When people ask if it’s healing
For your legs and your arms
Like the back of your palms
Are still scarlet and constantly peeling

They say it’ll pass but can’t tell you when
You see a marked improvement and then
Your new skin gets drier
Is once more on fire
And the whole thing starts over again.

The spread of this thing is pervasive,
And clothing can be quite abrasive,
But if you went “nudish”
Although they’re not prudish,
You’d even make nudists evasive.

And if you’re an unlucky squire,
Watch out for the “Great Balls of Fire”,
But if you’re a lady
At the zoo then you maybe
The Mandrill’s object of desire.

Didn’t you thank them – it seems you forgot?
Fifty odd years in the Skin Plant for what?
So your angry storeman
Has just shot the foreman,
And the staff have now all lost the plot!

PRP is quite clearly no joke
And its treatment might well send you broke,
Though they don’t have an answer
You haven’t got cancer
And you’d much rather this than a stroke.

© Copyright Greg Shalless – 2008

The Right to Say “NO”

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Editor’s Note:

Regardless of the worthiness of any cause, you have a right say “No”.It’s very easy to say “No” when a stranger knocks on your door. Whatever they’re selling, we’re not buying.

Let’s face it — we’re all getting pretty darn good at saying “No”. In fact, for most of us, “No” has become a knee-jerk reaction to any solicitation. HOWEVER, it’s harder — and some might say it is impossible — to say “No” when the person knocking on that door is a granddaughter in a Girl Scout uniform selling Girl Scout cookies. Her advantage is called FAMILY.

It has fallen to me to make the case for you to donate $10, $25, $50 or $100 to support our PRP community which includes the following:

✽   PRP Facebook Support Group

✽  PRP Community on RareConnect

✽  PRP Survival Guide

✽  PRP Alliance, Inc.
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The opportunity to say “YES”

Has our PRP Community supported YOU or a loved one? Have you had a question answered? Have we been able to turn fear into hope?
If the answer is No”, then please OPT OUT of any future fundraising emails from the PRP Alliance. However, if your answer is “Yes”, then please consider a donation to the PRP Alliance.

How will we use the money you donate?

Our budget is admittedly austere. Patient organizations for psoriasis and eczema have million dollar budgets with paid staff. Imagine, with only $3,600 we can jumpstart a year of building awareness, supporting research and helping our worldwide PRP community meet the challenges of body, mind and spirit. Unfortunately, the financial demands we face are front-loaded during the first three months of 2018.
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✽  Annual dues ($250): National Organization of Rare Disorders (NORD) and the Coalition of Skin Diseases (CSD)

✽  Communication Technology ($1,340): Constant Contact (communication) and ReadyTalk (video conferencing)

✽  Advocacy Events ($2,010):  Annual meeting of the American Academy of Dermatology (February 16-19) in San Diego and Rare Disease Week on Capitol Hill (February 25-March 1) in Washington, DC .

A community of PRP patients and caregivers

Whether patient or caregiver, active or in remission, we are on the same journey. YOU have not been alone.
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We itch together
We shed together
We cry together
We listen to each other
We share. We care.
We learn from one another
We are family
Thus far, 47 fellow PRP patients and caregivers have donated $2,810 (78% of our goal). These donations range from $10 to $220 with an average of $60. Quite frankly, any amount you can donate will be very helpful in allowing us to achieve our goals.
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✽  If you need more information to either inspire or justify a donation CLICK HERE

 If you already know that you want to make a donation via PayPal CLICK HERE

✽  If you prefer sending a check, please make it payable to “PRP Alliance” and mail to: PRP Alliance, 1500 Commerce Drive, Plano, TX 75093-2640, USA. The PRP Alliance is a 501(c)(3) is a. tax-exempt patient organization. ID# 47-3868578

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THANKS to those who have already donated…

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)
Tierney R (Virginia Beach, VA)
Elaine A (Reno, NV)
Sara K (Miami, FL)
Cay & Bill B (Berthoud, CO)
Darcy L (Colorado Springs, CO)
Cami S (San Jose, CA)
Sharlene C (Australia)
Linda L (Somerset, CA
Roberta K (Sicklerville, NJ)
Deborah W (Royal Palm Beach, FL
Marion M (Dublin, Ireland)
Jan and Malcolm T (Ringwood, NJ)
Joan P (Portland, OR)
Mark & Paul A (Boston, MA)
Joyce & Stephen T (location n/a)
Daina B (West Sacramento, CA)
Jeff S (Dayton, OH)

Remember: We’re family and we need you.

The PRP Community on RareConnect

The PRP Alliance is working with RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Alliance is a member of NORD and supports the PRP Community on RareConnect — a multi-language, non-Facebook option for adults with PRP and the parents of children diagnosed with juvenile onset.

RareConnect provides a “safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.”

Communities

RareConnect includes disease-specific online communities that enable people living with rare diseases to meet, share stories and learn from each other. Communities are created in partnership with patient groups who bring resources such as moderators, relationships with specialists and validated information.

Translation

RareConnect helps people who live with rare diseases from around the world to connect by providing different translation services. They provide an integrated machine-translation service but also an additional human translation service to ensure quality communication between members of the network. Languages include English, German, Spanish, French, Italian and Portuguese

Storytelling

Being able to share your story of living with a rare disease is an important step in connecting with others in a similar situation as well as allowing others to learn from our experience. RareConnect allows us to share our stories and translates it into the many languages of the platform therefore allowing people from many other cultures to benefit from it.

Connections

Connect with other people living with rare diseases in order to share experiences, find support, ask questions and gain access to a rich network of supportive patient organisations.

GO TO: https://www.rareconnect.org/en/community/pityriasis-rubra-pilaris

PRP Community Resources

Message from the Editor

The onset of my version of PRP began in early August 2012 with the sudden appearance of a small, red spot on my right temple near my hairline. Within a week the “inconsequential” spot had grown in size — enough to prompt a call to my dermatologist.  By early September the side of my face, from my forehead to jaw, had been engulfed by red.

Initially misdiagnosed with seborrheic dermatitis, it took three months, the clinical observations of a more seasoned dermatologist, and a “supporting” biopsy before an “official”  diagnosis of PRP was rendered. My treatment plan was initiated in early December with slow-paced success. It took another seventeen months before I was med-free and symptom free.

Whether you are a PRP patient or caregiver, you are on a journey that few can understand. There is, however, a PRP community of fellow travelers who have faced the same challenges of body, mind and spirit that you face today. The journey from onset to remission should not be undertaken alone.

Bill McCue


Over the past five years there has been a dramatic expansion of resources available to support PRP patients and their caregivers. The PRP community must become more proactive in building awareness of these resources during 2018among two constituencies:

✽  PRP patients and caregivers

✽  Healthcare professionals responsible for the proper treatment of PRP

As a PRP patient or caregiver it is critical that you understand these resources and share there availability with your own dermatologist, general practitioner, podiatrist, opthamologist, ENT specialist, mental health specialist, etc.

1.  Genetic and Rare Diseases Inforation Center  GARD, a program of the National Center for Advancing Translational Sciences, is funded by the National Institutes of Health. The office supports a variety of programs to serve the needs of patients who have any one of approximately 7,000 rare diseases known today. Their rare disease database includes information on each of 597 rare skin diseases including a recently updated overview of PRP. This is a “Must Read” for every PRP patient and caregiver.

❏  Read and share the GARD PRP Report

2.  National Organization of Rare Disorders     On September 20, 2017, NORD replaced the 1,500-word PRP Report (circa 2007) with a significantly more comprehensive, 5,000-word  2017 revision developed by the PRP Community. This overview is written in lay language and a “Must Read” for every PRP patient and caregiver.

❏  Read and share the NORD PRP Report 

3.  PRP Survival Guide     Since its launch in 2013, this ever-expanding repository of information now includes over 400 PRP-specific articles written in lay language on topics specifically related to the diagnosis and treatment of PRP as reported by PRP patients and their caregivers.

❏  Read “How to use the PRP Survival Guide”

4.  PRP Facebook Support Group     Founded in April 2013 by a PRP patient from British Columbia, Canada, membership in this Closed Group has grown steadily. Today over 1,170 PRP patients and caregivers ask questions, share our PRP-related experiences and provide insights only a fellow sufferer can offer. Our mantra: what works for one doesn’t work for all. We are in this together.

❏  Join the PRP Facebook Support Group

5.  PRP Community in Rare Connect     Established in April 2015 as an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. the PRP Community on RareConnect is a 200+ member, multi-language, non-Facebook option serving adults with PRP and the parents of children diagnosed with juvenile onset.

❏  Join the PRP Community on RareConnect

6.  PRP Alliance     From a domain name registered in February 2013, the PRP Alliance has evolved into a 501(c)(3), nonprofit, patient advocacy organization with a mission is to advocate the timely and accurate diagnosis of pityriasis rubra pilaris (PRP), the implementation of more effective and accessible treatment options, and an increase in PRP-specific research.

❏  Learn more about the PRP Alliance

On November 1, 2017, as part of the annual observance of PRP Awareness Month, the PRP Alliance executed mailing to the dermatology departments of 88 teaching hospitals in the U.S. This was the first salvo in a year-long Rare Skin Disease Referral Initiative seeking to link PRP patients with the PRP resources listed above.

The Last Word

PRP patients and caregivers who join the PRP community discover that they are not alone. YOU are not alone. WE are on this journey together.

Bill McCue, Editor PRP Survival Guide 1500 Commerce Drive Plano, TX 75093-2640 Email: bill.mccue@prpSurvivalGuide.org Website: prpSurvivalGuide.org

 

2018 Path Forward

                 

When moisturizers cake


Editor’s Note… On November 22, 2017, Sharyn B (Gold Coast, Queensland, Australia) posted the following message to the PRP Facebook Community. Members can CLICK HERE see the original, unedited version of Sharyn’s post and feedback.

“I’ve been told to moisturise at least three times a day. I don’t shower everyday (which is excruciating as i love I love my morning wake up shower). The problem I have now is the moisturiser is caking itself on me and I can’t get it if off with the Cetaphil cleanser I’m using. Any tricks or tips?” Here is the feedback she received.

Steven C — Glenrothes, Scotland, UK
Peanut oil

Vivienne P — Australia
I found being constantly covered in moisturizer was a positive. Showers dried out my skin and I dreaded them. I used products called  Dermol 500 and Zerobase Emollient Cream which are also antibacterial.

Sharyn B — Gold Coast, Queensland, Australia
The moisturiser makes me feel better. It’s the covering left over that I can’t get off to begin again freshly,

Gail C — Virginia Beach, VA
I found just the opposite. Shower for at least 15 minutes, BUT DONT DRY OFF! Apply moisturizer while still wet. It helps immensely

Tonya G — McDonough, GA
Same for me. I showered everyday, warm not hot, short 10 minutes, then Aquaphor all over. Sometimes I’d shower morning and evening during the worst of it. Helped greatly.

Gail C — Virginia Beach, VA
Even though Aquaphor is the nastiest stuff, it sure was a lifesaver for me!

Teri R — Ft. Wayne, IN
Are you wet when you put your clothes on then?

Gail C — Virginia Beach, VA
No. By then I am just damp. Oh, another tip. Go to thrift stores and buy clothes that are too big for you. Wash them before you put them on. The goop we put on our skin will ruin any good clothes you have. But you won’t mind throwing away clothes you pay very little for.

Jean N — Boston, MA
I use CeraVe Moisturizer. I don’t dry off. I apply the moisturizer while I am still wet.

Ginny M — Lexington,  SC
Shower! You need to get the old dead skin off. We shower twice a day when we flare. Do not let it cake up. (Editor’s Note: When Ginny says “We” she refers to herself and her three children, all diagnosed with juvenile onset PRP.)

Jan T — Ringwood, NJ
Mineral oil/baby oil helps remove stickier ointments like Aquaphor. When I cut back on baths and showers (which helped my itching immensely), I also switched to less greasy lotions. I could wash them off with a washcloth or sponge bath.

Pam M — Calgary, Alberta, Canada
I resorted to using a back reaching shower brush. Use it gently all over while in the shower.. Then pat dry and apply moisturizer liberally.

Derrick S — Oak Hills, CA
This thread is a PERFECT example of the PRP problem. No two of us are the same. We just guess at what works. If a shower doesn’t hurt or bother you then do it. If you like to moisturize then do that. In short, if it makes you feel better, do it. I personally think this thing runs its course and you should do what ever you like to be as comfortable as you can during the ride.

Jan T — Ringwood, NJ
That’s basically what my nurse told me.

Anita P
I sponge bath daily and shower once a week mostly to wash my hair. I use Dermasil lotion, mainly because it has lanolin in it. I had a lot of fissures when this all started and I used lanolin for them. I was hoping the lanolin would help keep them away. Dermasil doesn’t have buildup and I used it twice a day in the beginning and now only once a day unless I feel dry or a lot of itching because of being dry. I have the lotion in my car too.

Lorna R — Eugene, OR
I took two showers a day, moisturized well after each one. I do not agree with this no bathing for days on end. Skin, body cream build up, it stinks and it is uncomfortable. Take those showers, do what makes you feel good. This is all about comfort levels. I shampoo’d twice a day too.

Ellen H — Rome, GA
I can’t imagine if I had not bathed everyday what it would have been like, When I would shower everyday I could just rub skin off my body. This is some high maintence stuff

Tierney R — Virginia Beach, VA
I just took a shower on Monday, my first and only one in a month. I did NOT stink. My husband gets very close to me and tells me I do not stink, nor do I smell bad. Showering dries my skin out and is one of the reasons I take pain medicine. I believe showering robs the body of its natural oils. Putting lotion on does me no good, it’s more like a glue that holds the flakes down. We’re not all alike.

Anita P
I agree with every word you said, Tierney. And it’s It’s exhausting just a sponge bath with no soap. Just to wipe a little dust off and add a little moisture layer under the “glue”.

Sharyn B — Gold Coast, Queensland, Australia
Thank you Lorna. I do so enjoy my shower it actually takes my mind of all my woes for a short time

Tasha G — Corvallis, OR
I also bathed twice a day during my acute phase and found it so soothing, both physically and mentally. I have never been a long shower person, but just couldn’t resist when life was super hard due to PRP. I also found Epsom salt baths really helped with the itch. I say do what works best for you and be open to exploring various options. The thing about PRP is that it constantly changes, so what works today may not work tomorrow.

Michele L
My grandmother is having a bad flare up. I have been helping her shower and lathering her up with a psoriasis tar coal shampoo all over her body. Then we moisturize before her skin is fully dry. It stops the burning and severe itching. This condition is slowing killing her. It is so hard to see.

Teri R — Ft. Wayne, IN
How do you put lotion on places you can’t reach on your back?

Gail C — Virginia Beach, VA
Get a small paint roller with removable rollers. And a two-foot handle. Put a healthy glob on your back and roll it all over

Derrick S — Oak Hills, CA
That’s a brilliant idea Gail. Likely less irritating to the skin than rubbing it on.

When moisturizers cake

 

ReadyTalk Meet & Greet Planner

 

Welcome to the ReadyTalk Meet & Greet Scheduler. The PRP Alliance has arranged for a 14-day Free Trial of ReadyTalk, a video conferencing platform similar to GoToMeeting but more user friendly. The plan is to facilitate online gatherings where PRP patients and caregivers can meet, greet and chat. Based on the response, we ill schedule additional PRP ReadyTalks in December. The objective is to evaluate ReadyTalk as an ongoing communication tool for the PRP Community during 2018. If you would like to host a ReadyTalk Meet & Greet, simply follow the three steps below. Each two-hour ReadyTalk Meet & Greet will be supported by a fellow PRP patient or caregiver.

Step 1: Select a day

Step 2: Select a time for YOUR ReadyTalk Meet & Greet. Use the Time Zone Converter to confirm YOUR TIME versus DALLAS, TX time. All times listed below are Central Time (Dallas, TX)

Step 3: Send an email to bill.mccue@prpAlliance.org and include:

✽  Your name, e.g., Bill McCue
✽  Title, e.g., Welcome to PRP ReadyTalk
✽  Date: December 2, 2017
✽  Time: Saturday: 8 AM to 10 AM

PRP Ready Talk Schedule

SATURDAY, DECEMBER 25

✔︎ 8 AM – 10 AM:  Bill McCue — Welcome to PRP ReadyTalk

✔︎ 4 PM -6 PM:  Bill McCue — Welcome to PRP ReadyTalk


PRP Facebook Membership Milestone

From the Editor…
A milestone is defined as “an event or achievement that marks an important stage in a process.” PRP patients and caregivers know about milestones. We already celebrate important milestones in our journey from onset through remission.

✽  Ability to sweat
✽  Return of fingernails to pre-onset glory
✽  Return of hair
✽  A good night’s sleep
✽  Finding a treatment option that is affordable
 Returning to the workplace

Now it’s time for the PRP Facebook Support Group to celebrates its own milestone. On November 3, 2017 — just three days into PRP Awareness Month — Tim W from Mackinaw, IL became the 1,100th member of the PRP Facebook community.

Think about it. Formed in April 2013 by Jonah Grant-Scarfe (Vancouver Island, British Columbia, Canada), it took the PRP Facebook Community nearly two and a half years to reach 500 (September 6, 2015). Membership milestones have continued unabated.

   600 on March 21, 2016 — 166 days
   700 in early October, 2016 — 199 days
   800 on January 2, 2017 — 88 days
   900 on April 15, 2017 — 103 days
   1,000 on July 10, 2017 — 86 days
   1,100 on November 3, 2017 — 116 days

Predictably, the PRP Facebook population ebbs and flows with flows outpacing ebbs. On average in 2017, it takes three months to add 100 members. At that rate, the 1,200 member milestone  before Rare Disease Day (February 28) and 1,500 “mega” milestone by  PRP Awareness Month (November 2018).

How to Join the PRP Facebook Support Group

For those who are seasoned Facebookers, the PRP Facebook Support Group is relatively easy to find.

   Go to Facebook
✽   Click: “Search for people, places and things”
✽   Type: “Pityriasis Rubra Pilaris (PRP)” including the PRP within the parentheses
✽   Click: “Ask to join”

Eleven Reasons to Join

In March 2014, the members of the PRP Facebook Support Group were asked the question: Why should a PRP patient join the PRP Facebook community share? The 11 reasons listed below were the result of the 19 patients and caregivers who responded. They are just as valid for the PRP Community on RareConnect.

1. To better understand pityriasis rubra pilaris through the collective, first-hand experiences of those who have been afflicted.

We are in this together.

2. To provide — and to receive — encouragement and emotional support.  This is especially important in the absence of an existing support system.

We are in this together.

3. To minimize loneliness and feelings of isolation. To know that we are not alone. We are a community of kindred spirits.

We are in this together.

4. To effectively manage expectations and maximize hope.  We want more than our fair share of good news and are willing to work for it.

We are in this together.

5. To lighten the burden placed on loving family members by sharing that burden with the PRP community.

We are in this together.

6. To recognize that everyone has their own version of PRP and what works for one may not work for another.  We can find effective ways to cope with pain, anxiety, stress, depression and frustration.

We are in this together.

7. To promote a better understanding of our disease within the PRP community by sharing our personal experiences with treatments, dermatologists and other health care professionals.

We are in this together.

8. To promote participation in bona fide research projects designed to improve the diagnosis, treatment and understanding of PRP by the medical community. We must find ways to enlighten dermatologists and other healthcare professionals.

We are in this together.

9. To maintain a core value of acceptance, understanding and empathy.

We are in this together.

10. To vent to each other when our pain is too great,  our frustrations unbearable and our fear overwhelming.

We are in this together.

11. To meet a fellow PRP face to face, in the flesh. Isn’t it about time we hugged?

We are in this together.

Another option to to join the PRP Facebook Support Group is to just CLICK HERE.


Have you completed your PRP census form?

As of November 15, 2017, the PRP Community Database had identified  1,000 PRP patients who are members of the members of the PRP Facebook Community. Unfortunately, only 252 have provided their onset date, onset age and current status (active vs.remission). Please complete the PRP Worldwide Census. LEARN MORE.

 

OTR26 — PRP Facebook Membership Milestone