See February issue

On the Road…
February ✱ 2015
The Journey from Onset through Remission
Stelara®
Cosentyx®
Cyclosporine
How to find a Derm
People who stare
PRP Profile: California
What worked
FB Census
Aziz’ Story
Biopsies
PRP Emeritus
Atypical Type 2
Diabetes
About RDLA
Nicola’s Story
PRP Mugs
Jake’s Story
PRP Poems
Dr. Eastham
Chumming
Lay Language
Rare Disease Day
Nitrile Gloves
SG Appendices
24 articles and 409 pages added to the PRP SURVIVAL GUIDE
On the Road…
The Journey from Onset
through Remission
A moment of retrospection
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In early February, 2013, I followed a series of
links to a website promoting Rare Disease
Day. What I saw must have been
inspirational. Why? Because on February 8, I
registered the domain: prpAlliance.com. That was
the sum total of my participation in Rare Disease Day 2013.
My “get up and go” … “got up and went”
The most long-lasting and debilitating reality of my version of PRP
February 2015 ✱ Volume 2, Number 4
Copyright © 2014-2015 by PRP Alliance
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Published monthly by
the PRP Alliance
1500 Commerce Drive
Plano, TX 75093-2640
Phone: 214-205-0574
EDITORIAL
Publisher & Editor: Bill McCue
Content Coordinator: Nicola Galt
Senior Proofreader: Pat Batty
Voluntear Prufreedur: Candace Cooper
SUPPORT GROUP LIAISON
Facebook: Tierney Ratti, Administrator
PRPSG: Still seeking a volunteer
SUBMISSION OF CONTENT
Letters, articles, updates, events, images
and inquiries regarding On the Road…
should be sent via email to
Bill McCue at (editor@prpalliance.com)
or via the PRPA website (prpAlliance.com)
OPT-OUT POLICY
Anyone who is currently on the mailing list
to receive On the Road…The Journey from
Onset through Remission may request
to be removed from the mailing list
at anytime via email.CLICK Opt-Out.
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was a lack of energy. A one-hour trip to Walmart required three or
four hours of convalescence. Even the twice-daily, hour-long
application of triamcinolone, Clobetasol®, urea lotion and
Desonide® required a nap of equal duration.
So I sat on my butt and researched
It was amazing. Six hours. Eight hours. Ten hours at the keyboard
and no fatigue whatsoever. I cruised through nearly 30,000 emails
in the PRP Support Group archives and collected over 900 valid
email addresses. The PRP Worldwide Census began in November
2013 and concluded on Rare Disease Day 2014. I was still inspired.
So I sat on my butt and wrote
The first of 16 PRP community newsletters was published on April
1, 2014. A total of over 300 pages of PRP-related content has been
made available to the PRP community in downloadable PDFs like
the issue you are about to read. On January 1, 2015, the PRP
SURVIVAL GUIDE was uploaded with an initial content of 60 pages.
As of February 1, the total page count in the PRP SURVIVAL GUIDE
has topped 450 pages of downloadable PDFs.
Off my butt and headed to California
During the next two months, the PRP Alliance will be focusing on
Rare Disease Day 2015, the American Academy of Dermatology
73rd Annual Meeting in San Francisco, publishing two more issues
of On the Road… and adding 200 more pages to the PRP SURVIVAL
GUIDE. I guess it’s time to get serious.
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Bill McCue
Publisher & Editor
Table of Contents
On the Road … The Journey from Onset through Remission: February 1, 2015
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1-3
PRP Facebook Support Group Census
Major effort in February to gather “missing”
core data by Rare Disease Day (02/28/2015)
Efficacy of Stelara®
Conflicting results with dramatic images of
success and stories of disappointment.
4-5
PRP Survival Guide Appendices
Links to a broad spectrum of PRP-related,
downloadable documents (136 pages)
Cyclosporine
The December issue omitted listing
cyclosporine. This article fills in the gap.
6
14
PRP State Profile
“Channels of Enlightenment” to be jumpstarted in California in search of 96 PRPers.
Cosentyx
A new drug from Novartis is in the pipeline
and holds potential for some PRPers.
How to find a dermatologist
Step-by-step procedures to find a PRP-savvy
dermatologist using AAD’s “Find-a-Derm.”
Jean-Luc Deslauriers Research Award
Dr. Brooke Eastham is recognized for her
PRP “Quality of Life” research efforts.
Revisiting the 2013 PRP Biopsy Poll
It’s time to update the 18-month-old poll
that gathered experiences of 256 PRPers.
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16-17
PRP & Managing Type 2 Diabetes Riding the A1c roller coaster for three years
from 6.0 mg/dL to 9. 9 and back to 6.0.
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PRP “Enlightenment” mugs
Show solidarity and order two PRP mugs …
for you and your PRP-savvy dermatologist.
PRP Profile: Aziz Tajuddin
Personal account from a Type 1 PRPer — from
onset to traveling the road to remission.
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People who stare at Pretty Red People
Seven PRPers and three PRP parents offer
comments about insensitive onlookers.
PRP Profile: Jake Stevenson
A mother’s story of her son’s courage in the
face of the mounting challenges of PRP.
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Chumming for a cure
Four PRPers/surrogates seek to clarify the
causes and cure for pityriasis rubra pilaris.
PRP Profile: Nicola Galt
Replacing a befuddled dermatologist, a new
“derm” diagnoses Type 2 in 15 minutes.
What worked; what didn't
How can we compare notes and share which
meds worked and which meds failed?
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Mock earns “Emeritus” moniker
At 85, this “active” PRPer is one of the two
oldest we know. The other is 85, too.
12
Atypical Adult Onset, Type 2
Jump-starting a discussion starting with
Sivilli, Galt, Gallagher and Bostick.
20
CISCRP, ORDR & RDLA
These three organizations should be on the
radar of the PRP community.
13
Nitrile gloves
A Facebook post about “hands” morphs into
a discussion about “nitrile gloves.”
21
PRP Poetry
Ten poems from a PRPers who fancy
themselves as poets. Enjoy. Smile.
10-11
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February, 2015 — PRP Facebook Census
1
2015 PRP Facebook Census begins
The Facebook Support Group has become the
Stand up and be counted
cornerstone of the PRP community. In less than
As part of the observance of Rare Disease Day
two years, the “Land of Chat” has amassed
2015 (February 28), the PRP Alliance is
nearly 2,000 posts and 20,000 comments since
launching a census of the PRP Facebook
April 2013.
Support Group. The goal is to “fill in the holes”
We have heard the lamenting of PRPers in
pain and imagined fellow PRPers doing their
“Dances of Joy” over a hard-earned victory. We
have received the virtual hugs of Karen Beetow
and watched the “wee ones” like Molly and
Lauren tackle the challenges of juvenile onset.
The “Land of Chat” is a safe harbor for well
where important core data is missing.
Location
When a new member enters the “Land of
Chat,” they want to know if there is another
PRPer nearby. We are missing the locations of
70 Facebookers. There have been dozens of
PRP Meet & Greets this year where knowing the
over 300 PRPers in search of support,
locations was essential. We are not looking for
fellowship and answers to questions about the
your street address and postal code. All we
diagnosis and treatment of PRP. Yet, we are
need is a city or county, state (Plano, TX) or city
missing important “core data” with which to
or county, state, country. It could be as much as
better understand our disease. Specifically, we
Guildford, County of Surrey, England, United
are missing the following information from
Kingdom or as little as Guildford, England.
fellow Facebookers:
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Location: 70
Onset age: 164
Onset date: 158
Onset symptoms: 176
Misdiagnosis: 215
Diagnosis Date: 166
Diagnosing dermatologist: 186
Treating dermatologist: 225
Current Status: 174
No valid email: 113
Onset age, date and symptoms
The PRP Alliance has already accomplished the
“Onset Trifecta” for 481 PRPers. Not only can
we identify the children with PRP who are under
the age of 16, but we can also just as easily find
those who are over the age of 50. A total of
146 Facebookers are missing all three data
points.
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February, 2015 — PRP Facebook Census
The onset date can vary in its detail:
2
The diagnosis date can vary in its detail:
✴
Summer of 2012
✴
Fall of 2012
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Early August, 2012
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Late November, 2012
✴
August 2012
✴
November 2012
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August 8, 2012.
✴
November 28, 2012.
The onset symptoms are the first ones to
Diagnosing dermatologists
appear. Again, the description can be a few
Who made the call? While we are primarily
words or more.
looking for a name and location, PRPers
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a dime-size rash on forehead
typically volunteer much more. This is especially
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a dime-sized rash on my forehead near
true when the dermatologist is really gifted or
my right temple. Within a week it was the
the PRPer has been undiagnosed for an
size of a quarter. By the time I saw a
extended period, roaming around in a rat hole.
dermatologist, the rash was a bar on the
The “official” diagnosis is a godsend.
side of my face.
Treating dermatologist
The results of the Onset Survey will be
The diagnosing dermatologist is not always the
published in the PRP Survival Guide on Rare
dermatologist providing ongoing treatment.
Disease Day and updated monthly thereafter.
With a more chronic type of PRP, there may be
Misdiagnoses
a series of dermatologists involved. Here, too,
The PRPA database has identified 87 PRPers
we are looking for a name and location.
who were properly diagnosed with PRP from
Treating dermatologists will be listed in the
Day One. However, 322 PRPers were not so
registry of PRP-savvy dermatologists unless
fortunate. A plethora of alternative skin
their savviness is questioned by the PRPer.
maladies illustrate the befuddlement and
Current status
bewilderment when “one of us” is sitting on
With a prevalence rate of one “active” PRPer in
the examination table.
400,000, we are looking for the “active”
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Diagnosed with psoriasis: 137
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Diagnosed with dermatitis: 47
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US: 800
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Diagnosed with eczema: 36
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United Kingdom: 159
These diagnoses were all changed to PRP. In
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Canada: 87
many cases, however, PRPers were given drugs
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Australia: 56
that merely exacerbated the problem.
Current status can be Acute (Hell & Agony),
Diagnosis date
Knowing both the onset date and diagnosis
date helps to calculate how long it took for an
official diagnosis to be rendered. It also
confirms how long a PRPer went untreated or
was given medications that either didn’t help or
exacerbated the PRP.
needles in the PRP haystack. For example:
on the Road to Remission (RTR) and In
Remission. Anyone who is in remission should
include the date. The time period in months
from Onset to Remission would be valuable
information for researchers. Unfortunately, the
2014 PRP Worldwide Census did not include
that question.
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February, 2015 — PRP Facebook Census
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Valid email
Census Takers
The Land of Chat is a great place to chat, but
There is only one way to conduct a census in
the building of the PRP Survival Guide requires
the Land of Chat. We must go from castle to
email communication. The PRP Alliance has 863
castle. The following PRPers have graciously
valid email addresses. Here’s the promise:
agreed to cross over your moat and ask for your
✴
Opt-Out. You may opt-out of any and all
information. You have three options:
communication. All we ask is that you tell
✴
✴
Shout, “Begone, knave!” and they will be
us you want to opt-out. Otherwise, we
gone. A note will be made not to contact
will keep trying.
you again.
Opt-In. You may opt-in for everything
✴
Be silent. The census taker will come back
PRP. Whatever goes out, you get.
again. Then another census taker. And
✴
Opt-In with limitations.
another. Your information is just too
✴
PRP Community newsletter alert (1 per
valuable to the PRP Community for us to
give up. However, on March 1, the day
month).
✴
after Rare Disease Day, a note will be
PRP Survival Guide updates (no more that
made not to contact you again.
one every two weeks, maybe less).
✴
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Topic-based questions. When we seek
census taker with the information we
responses on a topic and don’t want to
seek, either in a private message
muddy the waters of the Land of Chat,
we will send you a question and seek a
response. You will determine the topics of
Open your door and provide the PRP
interview or in an email.
Your participation is appreciated.
interest, e.g., biopsies, acitretin,
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fingernails, disability claims, sweating,
Volunteer census takers include:
etc.
✴
Tierney Ratti
Confidentiality
✴
Nicola Galt
As we have said time and time again, the data
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we collect is presented as NUMBERS and not
CLICK HERE to learn more about becoming a
NAMES. It is presented in the aggregate, e.g.,
volunteer census taker.
“137 PRPers were diagnosed with psoriasis
before they were officially diagnosed with PRP.”
Path Forward — The Census
The 2015 Facebook Support Group Census
begins on February 1 and will conclude on
February 28. Information may be provided by
either a PRPer or a surrogate. A small cadre of
volunteer census takers will collect information
via private messaging (FB) or email.
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February, 2015 — PRP Survival Guide Appendices
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PRP Survival Guide Appendices
Basically, the Appendices are an ever-growing
repository for anything that is PRP-related that
doesn’t have a home in Parts 1-8 of the PRP SURVIVAL
GUIDE. Please review the initial content and you will
see the course we have charted. CLICK HERE if you
have any questions? Red text underlined indicates an
active hyperlink.
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Editor’s Note”:
APPENDIX C — Dermatology
As of February 1, 2015, the PRP Survival Guide
Appendices offers PRPers and their surrogates 436
✴
How to find a dermatologist
pages of content. It will continue to grow.
✴
Registry of PRP-savvy Dermatologists. ✴
American Academy of Dermatology
APPENDIX A — The Archives
✴
Newsletter Archive — Downloadable
✴
Journey from Onset through Remission.
handouts.
‣ A Vision: The road to a new PRP
✴
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Campaign to enlighten dermatologists
Enlightenment (reprinted from OTR...
APPENDIX D — PRP Profiles
‣ PRP Awareness Day (November 2013)
The stories about PRPers who fought
APPENDIX B — PRP Metrics
depression, despair and the ravages of PRP, yet
managed to survive. How did they do it?
PRPers need to know.
✴
2014 PRP Worldwide Census Report
✴
PRP State Profiles
✴
Nicola's Journey — Atypical Adult Onset
‣ California ✴
Aziz’ Journey — Classic Adult Onset
2015 PRP Facebook Support Group
✴
Jake’s Journey — Juvenile Onset
Census
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Mitch’s Journey — Classic Adult Onset
✴
Marjorie Mock — PRP Emeritus
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AAD Members by state (reprinted
November 2014)
community (October 2013)
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about PRP
Also includes Special Reports, flyers and
Special Reports
AAD 72nd Annual Meeting Recap
from OTR... April 15, 2014)
PDFs of back issues of On the Road…The
✴
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February, 2015 — PRP Survival Guide Appendices
5
✴
APPENDIX E — PRP Research
National Organization of Rare Disorders
(NORD)
This Appendix will include current and future
‣
Overview
PRP-related research as well as publish findings
‣
Rare Disease Day Poster
as appropriate. The more information and links
✴
we gather, the more meaningful will Appendix
C become. This is where the work of enrolling
participants in future PRP research projects will
Coalition of Skin Diseases (CSD)
‣
Overview
‣
Benefits of organizational
membership
occur.
✴
✴
Thomas Jefferson University, Jean-Luc
Skin Types (FIRST)
Research Award
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Brooke Eastham, Jean-Luc Research
‣
Overview
Award
‣
2014 PRP Awareness Day Message
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✴
Meet & Greet Gallery (pending)
✴
Gallery of Courage (pending)
‣
✴
APPENDIX G — Advocacy & Support
✴
‣
PRP "Enlightenment" mugs
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Evolution of support group
communication
‣
The Support Group Credo
‣
2015 PRP Facebook Support Group
Protecting the Land of Chat
‣
PRP (email) Support Group
Overview
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The Center for Information and Study on
‣
Overview
‣
Advocacy — Lay Language
Summaries
Rare Disease Legislative Advocates
(RDLA)
‣
Overview and the Rare Diseases
Act of 2002
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PRP Facebook Support Group
Census
✴
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PRP Alliance
PRP Parents Initiative
Overview
Clinical Research Participation (CISCRP)
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National Institutes of Health, Office of
Rare Diseases (ODR)
APPENDIX F — Gallery of Images
✴
Foundation for Ichthyosis and Related
APPENDIX H — Miscellaneous
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PRP Poetry
February, 2015 — The focus is on dermatologists
The focus of enlightenment: dermatologists
It’s time for PRPers in California to rally!
If you are a Californian with PRP, you have just moved to the front
burner. On March 20, 2015, the American Academy of Dermatology
will host its four-day Annual Meeting in San Francisco. This event
provides an opportunity to jump-start the effort to locate the estimated
96 active PRPers in the Sunshine State. With nearly 1,700 AAD
members in California, an above-average number will be in attendance.
A small cadre of PRPers will attempt to ask attendees: “Have you ever
diagnosed or treated a patient with pityriasis rubra pilaris?” One in 20
will say “Yes.” In an effort to develop “Channels of Enlightenment,” the
PRP Alliance will reach out to dermatologists in California. Read Article
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Finding the right needle in the haystack
Sheila Maloney, a recently diagnosed PRPer from Louisville, Kentucky,
joined the PRP Facebook Support Group on December 30, 2014.
Among her first comments was a warning (or perhaps a promise): ”I have
lots of questions.” Two weeks later she posted: “Having a very difficult
time finding a dermatologist in my area. I've been to two and am not
pleased with either. I know it is a stretch, but is anyone in the PRP
Facebook Support Group from Louisville? Learn how to use the
American Academy of Dermatology’s “Find-a-Derm” to identify
dermatologists who have the potential for PRP savviness. Read Article
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The role biopsies play in the diagnosis of PRP
For several weeks in July 2012, over 29,000 messages maintained in the
PRP Support Group archive were mined for two data points:
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Occurrences of “biopsy” and “biopsies”
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Email addresses of PRPers to be polled
As a result of this effort, a total of 487 PRPers were polled by email
and given an opportunity to participate. Remarkably, the PRP Biopsy Poll
reflects information shared by 256 (52.6%) PRPers.
The long-term objective of the PRP Biopsy Poll and the resulting
report was to initiate an ongoing dialogue within the PRP Community,
e.g., dermatologists, dermatopathogists and PRPers. Read Article
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PRP “Enlightenment” Mugs Available
We all agree that too many dermatologists are befuddled by
PRP. The diagnosis of PRP is too often delayed by the
misdiagnosis of psoriasis or some other skin malady. A scattergun approach to treatment options makes PRPers feel like lab
rats and guinea pigs. What can the PRP Community do?
Every PRPer can be an “Agent of
Enlightenment.” Every one of us has
“walked the walk.” In fact, many of us (or
the people we love) are still walking,
itching, shedding and in pain.
How many, however, are “talking the
talk?” How many are educating our
healthcare professionals? Dermatologists? General Practitioners? Podiatrists?
ENT specialists? Teachers? School
administrators?
Many PRPers have already ordered two
or more mugs. That’s why there are PRP
mugs in the hands of more than 80
dermatologists and a dozen teachers.
And then there are the family and friends
who want to travel with us on the Road
from Onset through Remission
.
When a PRP-savvy dermatologist gets a
PRP mug in recognition of his/her
savviness, colleagues in the clinic will be
reminded of the disease we share. When
we educate a healthcare professional
about our PRP, we are paving the way for
the next yet-to-be-diagnosed PRPer.
The 11-ounce, cream-colored ceramic
PRP “Enlightenment“ mugs are imprinted
on two sides with the messages:
✴ “Each one different. Each one
special.” (snowflake logo) and
✴ “We are not alone. We are in this
together.” (thumbprint logo)
CLICK HERE for more information and
become an “Agent of Enlightenment”
ORDER NOW if you are already an
“Agent of Enlightenment”
February, 2015 — When people stare…
8
What do you say to someone who stares?
We have all been in a situation when someone
casts a disapproving or hurtful eye at our red
skin, shedding skin, fingernails and general
appearance. How do PRPers maintain their
self-esteem? What retorts should we consider?
How do we turn the “stare”into an opportunity
to enlighten?
Sheila Judd Maloney
It's always awkward to hear someone say "well
your face looks better". I guess it's a
compliment, but I'm never sure how to reply.
Do I say, “ Thank you, but the rest of me that is
covered by clothing looks much worse, would
you like to see?” Ugh!
Abbie Cotrell
I experienced many times when people asked
if I had a bad sunburn. One time at a dinner
party honoring my husband, a guest who was
a complete stranger, said to me, " Wow, you
really cooked yourself didn't you!"
I learned to just laugh it off with the
comment that "I wish it were only a
sunburn!" and then I would
take that opportunity to
educate them and anyone
else around about PRP, a
rare and little known skin
condition. They were usually
embarrassed and apologetic
about their comment and
happy to learn about PRP.
I have found that most
people don't mean to be
rude, they are just curious
and I am glad that they
give me the opportunity to
explain. But if it were my
child, I might feel differently. I
have a feeling that there are a
lot more of us out there than
are diagnosed and maybe if we
spread the word, it would help
others.
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Other contributors: Candy Cooper, Christine
Günther, Jamie Eliason, Margaret Argent,
Barbara Parrott, Bab Poston, Tierney Ratti and
Bill McCue. Read full article
February, 2015 — Chumming for a cure
9
Why does it feel like we are chumming for a cure?
Somewhere on the road from diagnosis to
treatment, some variation of the following
question is asked: Is there a cure for PRP?
✴
“No” is the simple answer.
✴
“Not yet” is a more hopeful answer.
This at least opens the door to the
possibility of a cure.
✴
“We’re working on it” is the proactive
answer of a PRP advocate.
A more immediate question for PRPers to
ask is: What will finding a PRP cure require?
For non-fishing folks, chum is bait consisting
of fish parts and blood used to attract sharks
and other fish with a keen sense of smell. In
the movie “Jaws,” Chief Brody met the great
white while chumming off the stern of Quint’s
boat, the doomed “Orca.”
In some perverse way the PRP Community
must “chum” for research. We need to attract
dermatologists with data and opportunity.
On January 5, 2015, a short-lived
thread generated comments that
may help jump-start a discussion
about finding a cure for PRP.
Participants in that thread included:
✴
Peter Neale, Western Australia
✴
Greg Shalless,
Melbourne, Australia.
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Christine Günther,
Zürich, Switzerland
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Eve Hughes, Mississippi,
USA
In their comments it was
mentioned that many PRPers
believe that stress may contribute
to both the onset of PRP and
relapses that occur as we travel
from onset through remission. As a
rare disease (one in 400,000), there is simply
not enough research to render a defensible
position.!
Many PRPers also believe in the power of
positive thinking. No one has researched the
impact of positive thinking on PRP either.!
It is hoped that the comments of PRPers and
even a few PRP-savvy dermatologists might
chime in and agree that… Read full article
February, 2015 — What worked? What didn’t work?
10
Jump-starting feedback— “What worked for me…”
Hugh Ronalds had retired from the rigors of being
a CFO, manufacturer and self-starting entrepreneur.
The onset of PRP in 2013 first appeared as a rash that
progressively covered most of his body. As the soles
of his feet began to crack, he feared he would be
unable to walk. The never-ending itch and fatigue — it
was all part of a debilitating disease with no certainty
of outcome.
Fast forward seven months. When prescription
drugs failed, he followed a natural treatment plan. He
is back living a “normal” life that included a threeweek adventure to the Ukraine.
Hugh created a blog in July 2014 and began
sharing his experience. What follows is reprinted
with his permission. Hopefully, it jumpstarts a
discussion among PRPers with two questions:
“What worked for you, and what didn’t?”
1. Juicing fast — No solid food for 35 days. I
decided to test my naturopath's theory
that skin problems are largely a
compromised gut. Juicing cleans out the
gut and loads you with vitamins. Not much
fun and a bit of work, but worth it for the
results. I experienced dramatic
improvement during this time.
2. Coconut Oil — Coconut oil for the dry
skin and flaking and itching that comes
with the disease. Better than topical
steroids and natural. Feels great. Probably
good for everyone, not just PRPers. Nice
to find that a natural, healthy substance
works better than big pharma's, which I
proved with an independently-verified live
test.
3. Vaseline oil (and Shea Butter) — Vaseline
oil (and Shea Butter) for hands and feet to
prevent cracking and immobilization. On
hands inside plastic gloves and on feet in
plastic grocery produce bags . Not great
fun, but it worked to keep me mobile
when PRP was most intense.
4. Probiotics — Probiotics are good
bacteria; the bacteria required for a wellfunctioning gut and digestive system. One
of the downsides to antibiotics can be
reduced population of good bacteria in
the gut.
5. Diet — After juicing I went on a Vegan
diet until recently. Now with PRP no longer
a problem, I'm back to just healthy eating. Whole foods. Mostly vegetarian. Fish and
very limited red meat.
6. Exercise — Exercise is essential to health. Hard to do when you have little or no
energy, which occurs with PRP. However, I
did try to get out and walk every day.
7. Positive mental attitude — Studies show
that being happy has a huge effect on our
health. Having PRP is not a happy
occurrence. I made it into one by starting a
blog to record my experience as an
adventure. I also made an extra effort to
take time and focus away from PRP to
things I enjoy.
8. Take responsibility — Make your own
decisions! I got great advice and support
from some medical professionals and
terrible advice and direction from medical
professionals with the top-rated hospital
institution in the country. Take
responsibility, trust yourself and secondguess everyone, no matter their
credentials.
If you’re interested in learning more about
what Hugh Ronalds believes worked for him,
CLICK HERE and visit his blog — My Medical
Adventure.
So … what worked for you? What didn’t work for you?
We are collecting the experiences of PRPers and
surrogates like you. Check out the next page >>>>
February, 2015 — What worked? What didn’t work?
11
What topics do you want to see in the PRP Survival
Guide? Tell us. PRPers like you are the experts!
!
!
PRP Impact Areas
Topicals — OTC
Miscellaneous
101. Hands & Palms
134. Vaseline
165. Clothing options
102. Fingernails
135. Coconut oil
166. Laundry
103. Feet & Soles
136. __________________
167. Housecleaning
104. Toenails
137. __________________
168. Travel-related issues
105. Legs
Other Treatment Options
169. Biopsies
106. Torso, Chest
138. No meds strategy
170. How to find a derm
107. Torso, Back
139. Phototherapy
171. Misdiagnoses
108. Arms
140. Hydrotherapy (Avene)
172. Dealing with co-workers
109. Head, Scalp
141. Light boxes
173. Gloves
110. Head, Scalp, Hair
142. Shampoo
174. __________________
111. Head, Face, Hair
Alternative medicine
175. __________________
112. Head, Ears
143. Herbs
176. __________________
113. Head, Eyes
144. Vitamins
177. __________________
114. Head, Nose
145. Nutritional supplements
178. __________________
115. Head, Neck
146. Juicing
179. __________________
Quality of Life Issues
147. Probiotics 180. __________________
116. Lack of energy
148. Acupuncture
181. __________________
117. Sweating
149. Diet
182. __________________
118. Dry skin & Itch relief
150. Exercise
183. __________________
119. Relapses
Mental Health
184. __________________
Oral Drugs
151. Positive mental attitude
185. __________________
120.
Soriatane®
(acitretin)
152. Coping strategies
121. Methotrexate
153. Taking responsibility
122. Cyclosporine
154. Coping strategies
123. Remicade® (infliximab)
155. Handling setbacks
124. Humira® (adalimumab)
156. Depression
125. Enbrel® (etanercept)
157. Meditation
126. Accutane® (isotretinoin)
158. Yoga
127. Amevive® (alefacept)
159. Stress
128. Raptiva® (efalizumab)
160. Pain management
129. Prednisone
161. Keeping hope alive
Topicals — RX
Financial
130. Triamcinolone
162. Insurance
131. Clobetasol
Work & Employment
132. Desonide
163. Going back to work
133. Others
164. Disability
186. __________________
187. __________________
188. __________________
189. __________________
190. __________________
191. __________________
192. __________________
193. __________________
194. __________________
195. __________________
196. __________________
197. __________________
198. __________________
199. __________________
200. __________________
February, 2015 — Atypical Adult Onset, Type 2
12
One out of 8 million — Atypical Adult Onset
by Bill McCue
PRP Alliance
Will Sivilli
Dr. Michael Golden’s official
adult onset (Type I), with an
diagnosis of my PRP did not
estimated 80% reaching
differentiate between Type
remission in three to four years
1 and Type 2. I made an
or less. My own onset-to-
attempt to determine
remission journey mercifully
whether I was Type 1 or 2,
took only 20 months.
but got lost in a plethora of
In contrast, only five percent of
jargon, e.g., erythroderma,
all “active” PRPers are
palmoplantar, keratoderma,
diagnosed with atypical adult
follicular hyperkeratosis, ichthyosiform
onset PRP (Type 2), and their condition may
lesions and areas of eczematous change.
well linger for 20 years.
Good grief!
Statistically, there are only 40 “active” Type
It was during my initial intake at the
University of Texas Southwestern
Zealand shouldn’t even have one. Nicola
Dermatology Clinic in Dallas, that Dr. Arturo
wishes that were the case.
Dominguez told me it was Type 1.
I traveled my road from Classic Adult
Onset through Remission, oblivious to an
alternate destination: Atypical. Then I met
Niicola Galt
one … a Type 2. His name was Will Sivilli
from Tucson, Arizona. His emails to the PRP
Support Group list (circa 2012-2013) always
had a link to a condo he has in Rocky Point,
Mexico on the Sea of Cortez. He was a
frequent contributor, and I enjoyed reading
his posts. His Type 2-ness, however, never
piqued my interest. Back then I was more
interested in me.
Anne Gallagher
In early May 2014, a PRPer jumped out of
a perfectly fine airplane at 12,000 feet and
reached a speed of 127 miles per hour
before her parachute was deployed. Nicola
Galt from Central Otago, New Zealand,
became the second person I knew with
atypical adult onset PRP.
Type 2 on my radar
Jerri Bostick
2 PRPers in the U.S. (Will is one), and New
The hunt for Type 2 PRPers begins
The next step was to find any Type 2
PRPers in the “Land of Chat”, among the
350-plus members of the PRP Facebook
Support Group. On January 11, 2015, a post
brought two more Type 2 PRPers on stage.
The third Type 2 PRPer is Anne Gallagher
from Liverpool, England. Previously
diagnosed with eczema, it seems to have
changed as she became an adult. Officially
diagnosed last March at the age of 47, her
version of PRP affects her feet and knees,
with flareups on her scalp, face and back.
The fourth PRPer who is Type 2 Jerri
Bostick. The onset of her version occurred in
the summer of 2000 at the age of 37.
Diagnosed in January 2001, she worried the
whole time, red would cover her body. She
remembers being told “atypical” and that it
probably last three years. Yes, amazed and
thrilled. On Soriatane®, Accutane®,
I knew the demographics of PRP. Over 50
methotrexate, folic acid and all sorts of
percent of all active PRPers have classical
topical creams and ointments.
CLICK HERE for feedback from fellow PRPers
February, 2015 — Hands and nitrile gloves
13
From the Land of Chat: Hands and Nitrile Gloves
PRP Facebook Support Group
Author/Member: Estrelita Oliphant
PRP at its worst in 2012, I remember
wearing latex gloves to apply my creams.
— January 21, 2015
Sam Derwent
Scroll to
the end
for the
PRPer
Takeaway
Are you sure that's not a picture of my
hand?
Just kidding. But yes. My hands are
horrible at the moment, although I don't
Estrelita Oliphant
wear gloves to apply my creams/lotions
because the topical steroids are doing my
hands some good, and the other lotion keeps
them softer than they otherwise would be.
The worst part about the hands is when they
are dry and the flaky skin is hard and you go
to rub at something like your face and almost
cut yourself open! OUCH!!!
Estrelita Oliphant
Thats where the latex gloves comes in to
avoid scratching
you are so right — it’s dangerous to rub my
face right now!
Violet Hall Toler
It's so miserable when your hands are painful!
I cut off the tips of the fingers of my nitrile
gloves so I can sew (if my fingertips are not
involved.
Nicola Galt
Very familiar!
Marianne Boyles
I remember my hands being like that. I used
to sit out in the back yard and peel away.
Laura Bemboom
Thought this was a photo of my hand!
Annette Bailey
I’m thankful to be in a little better shape
now...but remember this well. At my hospital
we have fingerprint scanners to open our
medication Pyxis [an automated medication
dispensing system] for about six months it
would not read mine
Judy Huddleston Francisco
My hands are going thru that now...for the
2nd time & daggone they hurt! Sam Derwent--
Nicola Galt
February, 2015 — Hands and nitrile gloves
14
Laurel Adams
I know my hands are swollen, but they're not
My hands (and feet) have been like this again
as big as some folks' hands. Guess I'm going
for about two weeks this time. They are better,
to have to try nitrile gloves now.
just one split on the palm and a couple on
Sharon Taylor
each foot.
Judy, you will see a big difference. They are
Sam Derwent
more flexible.
Hmmm... latex gloves.... I've been told not to
Bill McCue
use them as they act like a "closed" dressing
Reading these comments this morning about
and I'm not to use closed dressings.
hands and nitrile gloves brought me back to to
Sharon Taylor
Sam, I wore nitrile gloves and I don't care what
anyone says, it helped a lot! Kept my hands
moist so that they didn't crack and bleed. No
infections from picking up the wrong
thing....etc, etc.
Nicola Galt
Nitrile gloves
The Nitrile gloves are latex-free right?
Cathy Rowe Hudson
They are latex free
Sharon Taylor
Yep! And I swear they helped speed the
healing up.
Cathy Rowe Hudson
I agree Sharon.
Lorna Roberts
Nitrile is latex free. I wore nitrile gloves for
three years, day and night. I never had any
problems. I would take them off when I
showered and applied the body cream. If I had
not worn them, my hands would have been
useless. Sometimes when you are just sitting,
you take the gloves off for a bit, but it did not
take long for that thick layer of keratin to
harden.
Judy Huddleston Francisco
Speaking of what type of gloves, I've been
using vinyl gloves but they are getting too
tight-even tho they're "one size fits most".
Bill McCue
a particularly bad place (circa late 2012). I
could handle the pain and discomfort of PRP
just about everywhere on my body, but the
pain associated with my hands and fingertips
was unrelenting and unbearable.
February, 2015 — Hands and nitrile gloves
Have you ever boiled cranberries to make
cranberry sauce? The skin on my fingertips
looked like a cranberry after it has popped.
Tiny paper cuts. No bleeding. As if my lack of
energy wasn’t enough, when I did have the
strength to do anything, my fingertips would
make me think twice.
15
I couldn’t handle nitrile gloves 24/7 but
always wore them at night after having applied
Clobetasol® and urea lotion. By early
afternoon I would “lather up”, put on the
gloves and marinate for a few hours.
!
Violet Toler
A quick comment on the nitrile glove article. Lorna says she wore them day and night. That
really does help. At first I wore them from
daylight until dark. Then I noticed a strange
smell after that many hours of wear. I was told
by someone on the the PRP (email) Support
Group, that a fungus can grow if you wear
them too long. After that, I never wore a pair
longer than six to eight hours. I then washed
my hands and reapplied lotion and a fresh pair
of gloves. Never noticed the smell
again. Another point: never wear the gloves
over steroid cream or ointment. Steroids have
Bill McCue
a warning to not use dressings or coverings.
<email> 01/24/2014
PRPer Takeaways — Hands & Gloves
✴
For six months the fingerprint scanners
night for three years with no problems and
dispensing system would not read Annette
Violet warns about wearing them too long.
✴
Violet Toler’s fingertips were in better
shape than her hands so she cut off the
tips of her gloves in order to sew.
✴
Lorna Roberts wore nitrile gloves day and
used to open an automated medication
Bailey’s fingerprints.
✴
✴
Judy Francisco remarked that vinyl gloves
are not flexible.
✴
PRPer Consensus: YES — Nitrile gloves are
good.
Sharon Taylor noted that the nitrile gloves:
The is always room for Jello® and another PRPer
“kept my hands moist so that they didn't
comment or a takeaway. CLICK HERE to tell us
crack and bleed. No infections from
your experience with nitrile gloves.
picking up the wrong thing....etc, etc”
Disclaimer: When reading the PRP Survival Guide remember: what works for one may not work for all.
Always check with your dermatologist before venturing into the area of self-treatment. Each PRPer has his
or her own version of our disease.
February, 2015 — Stelara®, Cyclposrine and Cosentyx
16
Update on Stelara®, Cyclosporine and Cosentyx
The efficacy of Stelara® as a treatment for PRP
In the January issue of On the Road… we jump-started a discussion of
acitretin, methotrexate, Remicade®, Humira®, Enbrel® and Stelara® . On
the Road… has received permission to share two dramatic photographs
that document the impact of Stelara over a short period of time.
The efficacy of Stelara as a treatment for PRP cannot be determined,
based on the mixed results among a very small sampling of PRPers.
Positive results: Ginny Maxwell, Jessica Radig (Corson), Glen Misek.
Negative results: Charley Morris, Leo Bruens and Will Sivilli. Too soon to
tell: Sharon Orantes. Clearly, there is a need to identify more PRPers
with stories to share about Stelara. Read Full Article
!
!
Cyclosporine: Sometimes it works, sometimes it doesn’t.
PRPers in the PRP community database, offered a suggestion regarding
the January 1 upload of content to the PRP SURVIVAL GUIDE, Part 6,
Chapter 2 (Drugs). For example, Marjorie Mock wrote: “One thing I
thought I would mention, is that under ‘drugs.’ You made no mention of
cyclosporine. After trying both acitretin and methotrexate and going off
because of the side effects, I ended up desperate, in the hospital where
the PRP expert doctor put me on cyclosporine. It was the beginning of
my journey back from the hell of PRP. I did not take it for long, but
cyclosporine was a godsend.” Marjorie was right. That’s why we have
added cyclosporine to the PRP SURVIVAL GUIDE. Read Full Article
!
!
New drug in the pipeline may have PRP application
On January 10, 2015, Glen Misek (Illinois) posted the following to the
PRP Facebook Support Group: “Soon a new biologic will be approved in
EU and US — Cosentyx from Novartis. Very stunning trial results in
psoriasis and other autoimmune diseases. Inhibits a protein il17a which is
also linked to PRP. You may want to ask your derm about it and potential
to help.”
On December 17, 2012, a U.S. federal trademark registration was filed
for COSENTYX by Novartis AG. Read Full Article
February, 2015 — Jean-Luc Deslauriers Memorial Research Award
17
PRPA Recognizes Brooke Eastham’s QOL Research
The PRP Alliance is pleased to announce the
recipient of the Jean-Luc Deslauriers
Memorial Research Award to dermatologist
Brooke Eastham, MD for her role in PRP
research efforts in 2014. This was the first
research study to assess the impact of PRP on
patients’ quality of life.
Since pityriasis rubra pilaris was first
described in 1883, there has been a dearth of
research to improve diagnosis and
treatment. Why?
Patient pool too small
With a prevalence rate of one in
400,000, there has never been an easyto-access pool of PRPers available to
participate in PRP-related research.
Compare the active populations in the
U.S. of three skin disorders:
‣ Active PRP: 972
Brooke Eastham, MD
‣ Active psoriasis: 7.2 million
‣ Active eczema: 31 million
PROCLAMATION
WHEREAS Jean-Luc Deslauriers (1948-2003) was the
founder of the PRP Support Group and longtime advocate for PRP Research;
WHEREAS The Jean-Luc Deslauriers Memorial Research
Award has been created to recognize
achievements in PRP research undertaken to
improve the diagnosis and treatment of
pityriasis rubra pilaris;
WHEREAS This is the first research study to assess the
impact of PRP on patients’ quality of life;
WHEREAS This study also investigated the clinical
presentation of adult-PRP in a large group of
individuals;
WHEREAS Hopefully the pool of PRPers eager to
conduct PRP research, will increase
dramatically over the next 12 months.
Participants included members of the PRP
Support Group as well as patients seen within
the Partners Healthcare System in Boston,
Massachusetts;
PRP research needs more recognition
WHEREAS When there is a credible research effort that
focuses on PRP, we have a responsibility to
support that effort. The Jean-Luc Deslauriers
Memorial Research Award has been created
to do just that.
This award is named after the founder of
the PRP Support Group. With passion and
understanding, Jean-Luc was the guiding
force behind the establishment of the PRP
(email) Support Group in November, 1997.
Over the past 17 years, the PRPSG has
served thousands of PRPers and helped
spawned an independent PRP Facebook
Support Group, as well as the PRP Alliance.
Jean-Luc lamented the lack of meaningful
PRP research. This award is offered in humble
recognition of his vision and the hopes of
PRPers on the journey from onset to
remission.
One hundred and forty-three PRPers
completed either all or part of the surveys;
WHEREAS The results of this study will hopefully lead to
a better understanding of the clinical course
of PRP and its impact on quality of life, ideally
encouraging further research into this disease
moving forward; THEREFORE BE IT RESOLVED That the PRP Alliance, on behalf of the PRP
Community, hereby awards the first Jean-Luc
Deslauriers Memorial Research Award in
2015 to Brooke Eastham, MD and all
researchers on this important project.
The award shall be presented at the
American Academy of Dermatology 73rd
Annual Meeting in San Francisco, California
(March 20-24, 2015).
February, 2015 — PRP and managing Type 2 diabetes
18
PRP wreaked havoc with my diabetes, but I’m back!
A personal account by Bill McCue
Onset 08/2012 @ 66, Remission 08/2014
January 2012 — 6.0
I became a card-carrying advocate of daily
blood glucose tests and quarterly A1c tests. It
I was diagnosed with Type 2 diabetes in
didn’t take long to get into the rhythm of Type
September 2004. Back then it was easy to
2 diabetes. By January 2012 the “Dance of
maintain daily blood levels with a daily dose of
Joy” was a regular occurrence when the A1c
metformin (1,000 mg). It was so easy that I got
was reported.
out of the habit of checking my blood levels.
April 2013 — 9.9
I took my meds and went about my life.
In November 2008 I passed out and fell
from the first rung of a step ladder and badly
bruised my foot. The normal battery of tests
given at the ER included a blood glucose test
that registered at well over 300 mg/dL. I
stayed in the hospital for a week as they
returned my levels to a safe range. I left the
hospital with Flex-pens to inject Humalog®
before meals and Levemir® at bedtime along
with the metformin.
Then came PRP and with it drugs and
ointments. My daily four-mile walk ended. The
strenuous outdoor projects in the Texas heat
ended. By April 2013 my A1c had skyrocketed
to 9.9, and my total cholesterol had spiked to
an unacceptable 242 mg/dL.
January 2014 — 8.8
A year later, just two months before I would
be declared in remission, my A1c was still too
high at 8.6. But the road to an acceptable A1c
had been well marked by my endocrinologist.
That ER visit was a wake-up call. I
immediately signed up with Diabetes America
and got serious about managing my diabetes.
!
!
In September 2014 on the meds side of the
treatment plan, Victosa® was added to the
Humalog and Levemir regimen in September
2014.
February, 2015 — PRP and managing Type 2 diabetes
19
During the previous year my
exercising had been limited by edema
and an ankle-to-knee blood clot. The
edema was addressed with increased
intake of water and the use of
compression socks. The blood clot
I check my blood levels daily and feel a sense of accomplishment
when 90-120 mg/dL appears.
required carefully monitored treatment
with warfarin. My commitment to a
sensible diet continued.
✴
Persistent pain on the bottom of my
right foot. I will expect my podiatrist to
January 2015 — 6.0
fashion an appropriate cushion to help
On January 6, 2015, as I walked into the
lessen the pain.
Plano Diabetic Centers of America clinic, I
✴
knew the A1c was going to be 6.0. When the
Edema in lower (right) leg. This is the
same leg that had the blood clot. My
lab technician confirmed 6.0, it was time to
GP has prescribed a daily 20 mg dose
celebrate … I was finally back to pre-onset.
of furosemide (diuretic) and water.
My next goal as a Type 2 diabetic is to start
walking four miles a day again. There are
residual issues from my PRP that continue even
after 10 months of remission.
There were times I thought the PRP would
beat me — but it didn’t. And that’s a very
good feeling.
Impact of PRP on Management of Type 2 Diabetes by Bill McCue
BP Systolic
BP Diastolic
A1c
Total Cholesterol
HDL
LDL
Trigylcerides
Goal
January 2012
April 2013
January 2014
January 2015
130
118
124
130
116
<80
66
66
78
80
<6.5%
6.0
9.9
8.6
6.0
<200 mg/dL
169
242
210
168
>40 mg/dL
78
138
115
68
<100 mg/dL
62
83
63
87
<150 mg/dL
78
103
159
88
Source: Diabetes Centers of America, Rosemary Lajara, MD
February, 2015 — PRP Profiles: Aziz Tajuddin, Jake Stevenson & Nicola Galt
On the Road with Aziz, Jake and Nicola
On the Road … with Aziz Tajuddin
In his words… “Having worked in the electronics industry in a high-stress
technical position, I was enjoying retired life in Laurens, South Carolina,
about 70 miles northwest of Columbia. A daily workout, traveling and
visiting my two grandchildren — life at 62 was very good.
“In mid-June 2014, my wife of 39 years noticed that my scalp was
peeling. She assumed it was sun-burn, even though as an Asian Indian, I
don’t normally sunburn. By early July I had red welts on my face, upper
chest and back. When the individual welts started to increase, I knew it
was time to see my Primary Care Physician (PCP).” Read Full Article
!
!
Mum and son set hight standard for courage
In his mother’s words… “At the age of 10, my son Jake presented with a
small rash on his arms just below his elbows as the first sign of PRP. The
months to follow consisted of many visits to our family doctor, who
determined that Jake had eczema (since I have it). Cream steroids were
prescribed, but the rash spread rapidly to his arms, hands and neck.
When the cream didn't seem to be working fast enough, an oral steroid
was given, which I felt completely blew Jake;s skin out. By August 2012,
he was 100% covered. It was then that he was referred to a skin
specialist, who on first look knew it was PRP. A biopsy was taken (it never
fully confirmed PRP, but did not rule it out), and he was given a course of
Neotigason (acitretin) to take.” Read Full Article
!
He diagnosed Type 2 in less than 15 minutes!
In mid-September 2013, Dr. Martin Keefe, a seasoned Consultant
Dermatologist and Fellow of the New Zealand Dermatology Society saw
a new patient for the first time. She presented with her hands and
forearms a bright shade of red. He asked a series of questions. He
looked at her feet — which were clear —and made other clinical
observations. Based on 27 years of experience in dermatology in the UK
and New Zealand, he immediately diagnosed pityriasis rubra pilaris,
atypical adult onset, Type 2. “He made a diagnosis of PRP because it
was obvious to him. I finally was in front of a PRP-savvy healthcare
professional. He made it seem so bloody easy.” Read Full Article
20
February, 2015 — PRP Recognition: PRPer Emeritus: Marjorie Mock
21
Marjorie Mock earns new moniker: PRPer Emeritus
Editor’s Note:
With a prevalence rate of one in 400,000, there are an
estimated 800 PRPers in the U.S. However, only 132
have identified themselves as “active”. We have a long
way to go.
On the Road… is pleased to share the stories of the
two oldest “active” PRPere we have found.
When Marjorie Mock retired after 25-plus
years in real estate, she and her “always
supportive” husband, Bob, became
quintessential “Snowbirds,” spending six
months in Greenwich, CT and six months in
Jupiter, FL, their official home.
For Marjorie, the first symptom of PRP was
Marjorie Mock
a red spot on her chest observed in January
2011. She was diagnosed with PRP the
following month by an especially caring
dermatologist, Dr. Steven Shapiro. She was
initially treated with Soriatane®, which was
abandoned due to harsh side effects. The
second drug, methotrexate, had side effects
that were just as bad. She was hospitalized.
“The drugs had exacerbated symptoms
Dr. Steven Shapiro
that were already bad. I was desperate.”
Under the care of Dr. Francisco Kerdel at
the University of Miami Hospital, Department
of Dermatology & Cutaneous Surgery, she was
given cyclosporine, and the results were
almost immediate. “It didn’t cure my PRP, but
it relieved the intense itchiness.”
Today, Marjorie is clearly on the road to
remission, albeit traveling at a snail’s pace. “It’s
like watching grass grow. I still have PRP, but
the intense itching has subsided, and with the
exception of my scalp, my skin continues to
improve.”
A four-year veteran of adult onset PRP,
Marjorie is an unabashed PRP Advocate.
✴
An early responder to the PRP
Worldwide Census in December 2013,
sharing information about the onset,
diagnosis and her treatment.
✴
A participant in the Thomas Jefferson
University, Phase 1 research project on
the causes of PRP (October 2012) which
required a blood and/or saliva sample.
✴
A participant in the TJU Phase 2 PRP
Research Project, which focused on the
diagnosis and treatment of PRP.
An advocate of holistic and natural
medicine, she hates drugs. “Even though I
have had no measurable success with
acupuncture and diet, my advice to every
PRPer is simple: learn how to cope with this
hellish disease. Contact other PRPers and
learn from the rest of us. Find a way to cope
with stress.”
Marjorie and Bob recently celebrated their
50th wedding anniversary. In spite of her PRP,
they go to the theater, movies and socialize
with friends regularly. They especially enjoy
taking senior-oriented lecture courses at the
the local university. Life goes on.
She and Bob may have slowed down from
their days as avid boaters, but these snowbirds
are still in “good health” and determined to
enjoy their “Golden Years” in spite of PRP.
February, 2015 — Advocacy & Support: CISCRP, ORDR and RDLA
22
We may have a rare disease, but we are not alone
“Lay language rule stalls — CISCRP continues the fight
The regulatory landscape continues to move towards a more patientcentric approach to medical research. During the past several years, the
Center for Information and Study on Clinical Research Participation
(CISCRP) has strongly advocated for lay-language clinical trial results
summaries based on feedback from patients who have long held that
narratives listed on clinicaltrials.gov are very hard to find and extremely
difficult to understand. CISCRP underscores the value of engaging and
appreciating patients as partners in research by disseminating summary
results at the end of each clinical trial that are in easy-to-understand nontechnical, lay language. Read Full Article
!
!
A PRP resource ignored for far too long
The Office of Rare Diseases Research (ORDR) was established in 1993
within the Office of the Director of the National Institutes of Health (NIH),
the Federal focal point for biomedical research. ORDR coordinates and
supports rare diseases research, responds to research opportunities for
rare diseases, and provides information on rare diseases. The goals of
ORDR are to identify, stimulate, coordinate and support research to
respond to the needs of patients who have any one of the approximately
7,000 rare diseases known today. To leverage its resources, ORDR fosters
collaboration nationally and internationally. Read Full Article
!
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Ever hear of Rare Disease Legislative Advocates (RDLA)?
There are issues facing the PRP Community that might require legislative
advocacy, e.g., insurance, disability, allocation of federal funds for PRP
research, legalization of medical marijuana, etc. RDLA is a resource that
should be on our radar. The following information has been “harvested”
from the RDLA website. RDLA is a resource for rare disease organizations
or individuals who are — or who want to be — legislative advocates.
RDLA provides: a DC office with workstation and meeting space for
organizations to use when working in DC, consulting on legislative and
grassroots strategies, online advocacy tools to contact members of
Congress Read Full Article and Rare Diseases Act of 2002
February, 2015 — PRP Poetry
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Sometimes it’s important to share feelings or a laugh. PRPers suffer the
indignities of a disease that tests our mettle and resolve on a daily, hourly
and too often a minute-by-minute basis. The following poems are offered
to bring hope and solace to PRPers and those who love them dearly.
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Abbie Cotrell
San Antonio, TX
Onset: 11/2005 at 61
Diagnosis: 05/2006
Status: Remission
about this pityriasis rubra pilaris by abbie massey cotrell
I search for words to tell
you the horrors
of my illness, tell you
about the changeling that visited
that night six years ago
and stole my skin…
took my clear, white skin
and left instead a raging red
that crusted over, cracked
open, peeled away and fell
from me.
I have watched since then,
fascinated by the metamorphosis
of each cell. I examine one silver flake
— more scale than skin —
and think about
Martians … and abductions.
Ridiculous! I want to scream —
tired of all the skin talk,
and then I find them —
the perfect words there on
my young son’s facebook post
Tue. Nov. 13,
“My cat looks strangely at
me when I’m naked ….”
and there it is — the
laughter that I have needed for so long
rolls out to cover my
exhausted skin.
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More PRP Poetry
February, 2015 — PRP Events
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February 28
2015
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World Rare Disease Day & Rare Disease Day USA
Rare Disease Day was established by the European Rare Disease Organization.
and first observed in Europe in 2008. The following year EURORDIS partnered
with the National Organization of Rare Diseases to sponsor Rare Disease Day in
the U.S. NORD will celebrate the 7th US Rare Disease Day in 2015. The goal of
Rare Disease Day is to draw attention to rare diseases as an important public
health issue that cannot be ignored. MORE ABOUT Rare Disease Day US and
World Rare Disease Day.
American Academy of Dermatology 73rd Annual Meeting
March 20-24
2015
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June 8-13
2015
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Over 8,000 dermatologists and other “medical personnel” from around the
world will assemble at the Moscone Center in San Francisco for the AAD’s 73rd
Annual Meeting. The American Academy of Dermatology is holding its 73rd
Annual Meeting in San Francisco, March 20-24, 2015, at the Moscone Center. With an anticipated attendance of more than 16,000, this meeting will feature
world-renowned leaders in the field of dermatology presenting the latest
research in the diagnosis and medical, surgical and cosmetic treatment of skin,
hair and nail conditions. MORE ABOUT AAD’s 73rd Annual Meeting
23rd World Congress of Dermatology
The 23rd World Congress of Dermatology in 2015 will take place in Vancouver,
Canada from June 8-13, 2015. The World Congress of Dermatology is the
world’s oldest and continuous international dermatology meeting. The first
Congress in 1889 pre-dated the modern Olympics by seven years. The last
Congress to be held in North America was in New York in 1992.The conference
will cover areas including diagnosis and management of specific disorders.
MORE ABOUT the 23rd World Congress of Dermatology
2nd Annual PRP Awareness Day
November 6
2015
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Over the next 365 days the PRP Community will be asked to provide core data
about their personal PRP experiences, identify PRP-savvy dermatologists who
diagnosed and treated them and become advocates for PRP enlightenment.
Success of our efforts over the next year will be based on a comparison of
benchmark statistics shared with the PRP Community on November 6, 2014.
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February, 2015 — List of content contributors
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The following PRPers and surrogates have shared their stories,
fears, anger, what worked and what didn’t work. As we collect
and report on the experiences of PRPers, never doubt the
importance the participation.
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Abbie Cotrell
Aimee Broberg
Amber Stevenson
Anne Gallagher
Annette Bailey
Aziz Tajuddin
Bab Poston
Barbara Parrott
Becky Schock
Bill McCue
Bob Harris
Brenda Masters
Candy Cooper
Cathy Hudson
Christine Günther
Claire Gearing
Dan McGowan
Erin Moran
Estrelita Oliphant
Eve Hughes
Gena Hubach
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Ginny Maxwell
Glen Misek
Greg Shalless
Hugh Ronalds
Jamie Eliason
Jan Underhill
Jerri Bostick
Judy Francisco
Karen Beetow
Karen Bull
Laurel Adams
Leeper
Linda Woods
Lorna Roberts
Margaret Argent
Margie Dillon
Marianne Boyles
Marij Bruens
Marjorie Mock
Melissa Ellison
Michele Herzog
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Natalie McKee
Nicola Galt
Pat Nathan
Peter Neale
Rebecca Leiba
Sam Derwent
Sam Robinson
Sandy Keller
Sarah Rose
Sharon Orantes
Sharon Taylor
Sheila Maloney
Terri Schuh
Thomas Heinzerling
Tierney Ratti
Trudy Mosel
Violet Toler
Will Sivilli