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 ! ! ! 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 ! 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 ([email protected]) 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. ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! 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. ! Bill McCue Publisher & Editor Table of Contents On the Road … The Journey from Onset through Remission: February 1, 2015 ! ! 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. 15 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. 7 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. 8 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. 9 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? 19 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 18 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: ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ 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. ! 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 ✴ Early August, 2012 ✴ Late November, 2012 ✴ August 2012 ✴ November 2012 ✴ 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 ✴ a dime-size rash on forehead typically volunteer much more. This is especially ✴ 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” ✴ Diagnosed with psoriasis: 137 ✴ Diagnosed with dermatitis: 47 ✴ US: 800 ✴ Diagnosed with eczema: 36 ✴ United Kingdom: 159 These diagnoses were all changed to PRP. In ✴ Canada: 87 many cases, however, PRPers were given drugs ✴ 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. ! February, 2015 — PRP Facebook Census 3 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). ✴ ✴ 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, ! fingernails, disability claims, sweating, Volunteer census takers include: etc. ✴ Tierney Ratti Confidentiality ✴ Nicola Galt As we have said time and time again, the data ! 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. ! ! ! ! ! ! ! ! ! ! February, 2015 — PRP Survival Guide Appendices ! ! ! ! ! ! 4 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. ! ! ! 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 ✴ ! 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 ✴ Mitch’s Journey — Classic Adult Onset ✴ Marjorie Mock — PRP Emeritus ✴ ! AAD Members by state (reprinted November 2014) community (October 2013) ! ‣ 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 ✴ ‣ 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 ✴ Brooke Eastham, Jean-Luc Research ‣ Overview Award ‣ 2014 PRP Awareness Day Message ! ✴ ✴ Meet & Greet Gallery (pending) ✴ Gallery of Courage (pending) ‣ ✴ APPENDIX G — Advocacy & Support ✴ ‣ PRP "Enlightenment" mugs ‣ Evolution of support group communication ‣ The Support Group Credo ‣ 2015 PRP Facebook Support Group Protecting the Land of Chat ‣ PRP (email) Support Group Overview ‣ ! 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 ! PRP Facebook Support Group Census ✴ ✴ PRP Alliance PRP Parents Initiative Overview Clinical Research Participation (CISCRP) ! ‣ National Institutes of Health, Office of Rare Diseases (ODR) APPENDIX F — Gallery of Images ✴ Foundation for Ichthyosis and Related APPENDIX H — Miscellaneous ! ! ! ! ! ! ! ! ! ! ✴ 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 ! ! 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 ! ! 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: ✴ Occurrences of “biopsy” and “biopsies” ✴ 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 6 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. ! ! 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. ✴ Christine Günther, Zürich, Switzerland ✴ 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 ! ! 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 23 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. ! 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. ! ! More PRP Poetry February, 2015 — PRP Events ! ! February 28 2015 ! ! ! ! ! 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 ! ! ! ! ! ! June 8-13 2015 ! ! ! ! ! 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 ! ! ! 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. 24 February, 2015 — List of content contributors 25 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. ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ 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 ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ 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 ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ ✴ 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
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