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.

A Review on PRP

From the Editor — On January 4, 2018, a well-documented overview of pityriasis rubra pilaris written by Drs. Dingyuan Wang, Vanessa Cui-Lian Chong, Wei-Sheng Chong and Hazel H. Oon was published online by the American Journal of Dermatology. CAUTION: Section 7 on TREATMENT is worth a careful review by all PRP patients and caregivers.

This scientific article is not written for patients or non-medical caregivers. It should, however, be shared with dermatologists.Just ask: “Have you read the online Review on Pityriasis Rubra Pilaris in the American Journal of Dermatology?”

1   Introduction
2  Clinical Manifestations
3  Pathogenesis
4  Associated Conditions
5  Diagnosis
6  Differential Diagnosis
7  Treatment
8  Conclusion

A Review on PRP

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

                 

Thank you for subscribing…

It was Thursday, October 1, 2015 when I posted the 24th and final issue of On the Road… on the PRP Alliance website. After writing 598 pages of “PRP stuff” I was ready to shift my focus to the PRP Survival Guide. No more self-imposed, end-of-the-month deadlines for me. Besides, I was in remission.

It has been over two years and I am still in remission — but eager to publish a newsletter for the PRP community.

I urge every PRP patient and caregiver who subscribes to On the Road…  to take the time to read what we publish and share your personal insights. PRP patients and caregivers live with PRP day in and day out. You are the subject matter expert for your version of PRP. We need to tell all our stories.

Bill McCue, Editor

PRP Awareness Month Begins Today


November 1, 2017
Every patient organization needs an Awareness Day they can call their own. We celebrate Rare Disease Day on the last day of February and share the spotlight with 7,000 other rare diseases. However, PRP Awareness Month gives us 30 days to crow like a banty rooster, shake our tail feathers and get more than our fair share of attention. — Bill McCue

My first PRP Awareness Day was November 28, 2012 and quite “unofficial” by any standards. It began with a phone call from my dermatologist’s office. I was told that the red spot on my forehead on August 8 — nearly four months prior — had been the onset of pityriasis rubra pilaris. Like most PRP “newbies”, I spent the next few days searching the internet and learning what little there was to learn about PRP. What I found was redundant, insufficient, outdated, and typically written for an audience of healthcare professionals.

On November 1, 2013, I celebrated PRP Awareness Day once again. This time I sent out over 1,500 emails to PRP patients and caregivers and called the effort the PRP Worldwide Census. It had taken me several months during the previous summer to review over 29,000 emails in the PRP Support Group Archive going back to November, 1997.  As I  collected email addresses I also harvested “core” information about the onset, diagnosis, and treatment of PRP. It took six months to solicit 500 responses. That was the genesis of the PRP Community Database.

November 6, 2014 was the first “official” observance of PRP Awareness Day. The date was selected to commemorate the signing of the Rare Diseases Act of 2002 that set the threshold for a rare disease. A rare disease or disorder is defined in the U.S. as one affecting fewer than 200,000 Americans. Using the European standard, however, the U.S. threshold would be only 160,000. Today there are more than 7,000 known rare diseases, and it is estimated that about 30 million Americans are affected by them.

November 6-8, 2015 was the first “official” observance of PRP Awareness Weekend since the 6th fell on a Friday. The “Big Event” would be a global  Meet & Greet. Whether face to face or using technology (FaceTime, Skype and ooVoo) we pitched the idea to the PRP Facebook Support Group.  Other than a few face-to-face Meet & Greets and a spike in Facetime encounters, the effort missed it’s mark. Lesson learned.

November 1-30, 2016 was the first “official” observance of PRP Awareness Month.  Perhaps all we needed was 30 days rather than a weekend or a day. Sunday, November 6th was selected to host a 24-hour GoToMeeting gathering. Only the predictable and dependable cadre of seasoned PRP travelers stopped by to chat.


An important lesson has been learned over the past five years. If you run the same flag up the flagpole, the same people are going to salute. We’re going to try something different.

  ✔︎  Revive the PRP Community newsletter
  ✔︎  Launch the PRP Worldwide Census
  ✔︎  Execute the Rare Skin Disease Referral Initiative
  ✔︎  Initiate PRP Surveys
  ✔︎  Recruit participants for PRP research
  ✔︎  Promote legislative advocacy
  ✔︎  Support the PRP Alliance.

 

 

PRP Awareness Month Begins Today: OTR025.1

Resources Supporting PRP Patients & Caregivers

PRP Alliance.Inc.

The PRP (Pityriasis Rubra Pilaris) Alliance is a 501(c)(3), nonprofit, patient advocacy organization.Our mission is to advocate for 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. Advocacy contacts:

Bill McCue, Founder/President
Plano, TX
Telephone: (214) 205-0574
Email: bill.mccue@prpAlliance.org

Ginny Maxwell, Director, Patient Advocacy
Lexington, SC
Telephone: 803.640.5769
Email: ginny.maxwell@prpAlliance.org

PRP Survival Guide

The PRP Survival Guide is an online repository of patient-reported experiences as reported by the PRP community. It  is offered as an alternative to unstructured and random searches by newly diagnosed PRP patients using Dr. Google, Dr. Yahoo and Dr. Bing. These efforts will almost always lead to frustration and frequently to misinformation.

If we do are job properly, you will either (1) find the answers you seek or (2) send the PRP Survival Guide editor out in search of answers to questions we haven’t asked. Eight chapters provide an organizational framework for PRP patients and caregivers:

✽  Basics
✽  Diagnosing PRP
✽  Treating PRP
✽  Daily Life
✽  PRP Parents and Children
✽  PRP & Remission
✽  PRP Research
 PRP Advocacy

PRP Facebook Support Group

Founded in April 2013, the membership in this Closed Group has grown steadily to nearly 1,100 with representation on every continent. Truely the “Land of Chat”, post a question and comments flood in. Need a hug, the huggers respond. Need a friend … there’s a community of fellow travelers ready to lend an ear or a shoulder. Need information … there are nearly 1,100 members who can share what works and what doesn’t for their unique version of PRP. We learn together. We are in this together.

PRP Community on RareConnect

The PRP Alliance supports RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. Established in April 2015, 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.

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.”

Genetic and Rare Diseases Information Center

The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.

The PRP Community advocated that all patients diagnosed with PRP should be routinly referred to GARD’s PRP Repost rather than Dr. Google, Dr. Yahoo and Dr. Bing.

National Organization of Rare Disorders

The National Organization of Rare Disorders maintains a Rare Disease Database to provide brief introductions to more than 1,200 rare diseases — including pityriasis rubra pilaris. These rare disease reports are primarily geared toward patients and families. There is also, however, an important secondary audience, e.g.,  physicians, researchers, nurses, students, journalists and others who might request and benefit from such rare disease information.

The PRP Report (circa 2017) has recently replaced the 2007 version.