04.04.00 blood tests, labs
04.03.00 bathing, showering
What are the issues related to bathing and showering?
April 28 at 10:39am
We had a water main break so I have had only sponge baths for two and a half days. This morning, I have almost NO flakes after having massive flaking the past month. Has anyone found success in cutting down on baths/showers? They feel so good, but if it means fewer flakes, I’d go for it. Esp since I’m really not fully sweating yet.
04.02.00 Americans with Disabilities Act (ADA)
Are PRP patients in the U.S. protected by the Americans with Disabilities Act (ADA)?
04.01.00 Issues related to PRP and alcohol?
Can PRP patients drink alcohol?
Have anyone had any bad side effects from drinking a glass of wine while taking acitretin? https://www.facebook.com/groups/15865278115/permalink/10155123652973116/
04.00.04 The ROAD metaphor
From the very first issue of the PRP Community newsletter, the “Road” metaphor has been an effective tool for storytelling.
We use words like journey, travel, pedal to the metal and detour to describe movement. Similarly, the “Red Road” we travel goes from Onset to Remission and begs for highway signs seen along the way. Exit signs for Diagnosis and Mis-diagnosis, stress and even Facebook can be important visual markers. Since the road we travel is rarely smooth, a plethora of warning signs warn us of relapses, flare-ups, bad reactions to drugs, etc.
The PRP Survival Guide will embrace the “Road” metaphor and expand upon it. We will use a variety of signage
The last narrative a Newbie needs to hear is a technical essay with scientific terms strung together like a string of popcorn on a Christmas tree. The prose must be accurate, but it also must be readable. That first month of PRP can be terrifying. A thoughtful presentation can replace fear with understanding.
The further we travel down the “Red Road”, the broader the spectrum of topics. PRPers don’t always want the A to Z of every topic. Sometimes we just need A, D, G, M and Q. The Survival Guide will facilitate such selective mining.
Some reach Remission and never look back. Others linger to ensure that the journey is truly over. Thankfully there are those who stay vigilant for the travelers still on the “Red Road” in need of sage advice and words of encouragement.
The PRP Survival Guide will represent the collective experiences of hundreds of PRPers who have traveled, and continue to travel, a road that challenges body, mind and spirit. We will provide witness to countless PRP profiles in courage.
As published October 2014, page 8
05.00.04 The Road to Remission is a Metaphor that begs for Exploitation
First we start with the travelers
‣Backseat drivers (surrogates)
Then road signs on the journey
‣Hell & Agony (aka the twin cities)
Then signs as we near Remission
‣…And so many more
And finally Remission with its own signs
FYI: The “Road” is the Official Metaphor of the PRP Community newsletter.
From the Editor…
The following article details the support that patients suffering from rare diseases — and their families — can access. As you read, recognize the role played by the PRP Alliance, PRP Facebook Support Group, PRP Community on Facebook and even thePRP Survival Guide. Clearly, you are not alone; we are on this journey together.
Individuals and families affected by rare medical conditions might look to nonprofit support and advocacy groups for different reasons. Some may want to find other people who understand how having the condition affects their lives. Others are searching for medical information, treatment options, the latest research, or financial aid resources. This guide will help you learn more about the different types of information and services offered by nonprofit support and advocacy groups. We also include information about how to connect with others when your specific condition does not have a support and advocacy group.
Nonprofit support and advocacy groups may be referred to as nonprofits, patient support groups, condition-specific organizations, advocacy groups, public charities, or registered charities. These terms tend to be used interchangeably rather than being specific to the focus of the group. It is best to look beyond the label to find out what the group offers. In the remainder of this guide, we will refer to these groups as nonprofit advocacy groups.
What are the different types of nonprofit advocacy groups?
Condition-Specific Groups: Many nonprofit advocacy groups focus on one rare or genetic condition or a group of closely related conditions. Condition-specific groups often vary in their mission or focus. For example, some groups may focus on providing support or driving research, while other groups will offer a range of services, such as helping you find a doctor, organizing conferences, or working to gain the support of local, state or federal legislators.
Umbrella Groups or Alliances: Nonprofit advocacy groups may join together to tackle larger issues, such as advocating for legislation to help or protect all individuals with rare and genetic conditions. Umbrella groups include NORD (National Organization for Rare Disorders), Genetic Alliance, Global Genes, and EURORDIS (European Rare Disease Organisation). Examples of their accomplishments include the passage of the Orphan Drug Act, the Genetic and Information Nondiscrimination Act (GINA) and the European Union Regulation on Orphan Medicinal Products. These groups may also provide information and resources for specific medical conditions, but their activities and resources tend to be focused more on helping the rare disease community at large.
General Support Groups: Some nonprofit advocacy groups focus on a symptom that may have many different causes, such as vision loss or developmental disabilities. Other groups may focus on a part of the body or a body system, such as the liver or the immune system. These groups tend to offer general information and resources that may help anyone dealing with challenges addressed by the group. For example, the Center for Parent Information and Resources offers services to any family who has a child with disabilities.
What do nonprofit advocacy groups do?
Nonprofit advocacy groups typically offer the following types of services. Individual groups may not provide all of these services, so it is important to check each group’s website or contact them to learn more about what they offer.
Support: Most nonprofit advocacy groups help people connect with each other. Ways to connect online may include Facebook, blogs, listservs, Yahoo groups, and Twitter chats. Groups may provide opportunities to meet in person at yearly conferences, summer camps, or local meetings. Whether in person or online, support from others can empower you to take charge of your health.
Medical Information: Most nonprofit advocacy groups provide medical information in easy-to-understand terms to help you learn more about your medical condition, available treatment options, and current research. Information is often on the group’s website, but may also be available by mail, phone, or e-mail. If you do call and leave a voice-mail or send an e-mail, keep in mind that many groups have a very small staff, so it may take a few days to get a reply.
Resources: Nonprofit advocacy groups often have a list of helpful resources, such as related nonprofit advocacy groups, financial assistance resources, and sources for special medical equipment. They may also be able to give advice on dealing with school or health insurance issues.
List of doctors or clinics: Many nonprofit advocacy groups have a list of medical care professionals and clinics to help you find specialists with experience in diagnosing or treating a rare medical condition. Groups may work closely with clinical centers, sometimes called Centers of Excellence, or be involved in the training of specialists. Other nonprofit advocacy groups may have a list of doctors recommended by their members. Many groups also have a medical advisory board made up of experts in the field. If you can’t find this information on the group’s website, call or e-mail the group to see if they can provide you with a list of doctors or clinics.
Registry: A registry is a collection of information about individuals, usually focused around a specific diagnosis or medical condition. Many rare disease registries are maintained by nonprofit advocacy groups to help advance medical research for a particular medical condition. If the group does not have its own disease registry, it may know of an appropriate registry for your medical condition.
Research and Clinical Trials: Clinical trials are medical research studies in which people participate as volunteers. These studies may be evaluating new treatments or medications, searching for the cause(s) of a medical condition, or researching how the symptoms of the condition change over a person’s lifetime. Whether you are interested in enrolling in a clinical trial or aim to stay aware of potential new treatments and advances, you may want to find a nonprofit advocacy group that provides information about the latest medical research. Some groups raise money to offer grants to medical researchers or pharmaceutical companies who are developing new treatments. Often these groups will keep information on their website about the progress of supported research.
Advocacy: Advocacy for a rare medical condition may involve educating the public or medical community about the condition. A group may also take issues to local, state and federal governments in an effort to pass legislation that will improve the lives of those affected by rare and genetic conditions.
What should I look for in a support and advocacy group?
Evaluating a group is not always easy. When you are looking for a nonprofit advocacy group, you want to make certain that the group offers helpful and up-to-date information. The mission statement of the group can help you understand the focus of the group’s activities. Also look at who is involved in running the group. The group’s staff members may have the medical condition themselves or have an affected family member. Other staff members may have a degree in a related field, such as social work, public health, education, communication, or medicine.
Learn about the group’s funding sources and how they spend donations. The activities of 501(c)3 groups are strictly regulated, which makes certain that the donations and grants are used properly. A similar status in many European countries is Registered Charity. Some groups have a membership fee, corporate sponsors, or use website advertisements. If you cannot afford the membership fee, contact the group to see if it can be waived.
If you need help evaluating a group, please contact a GARD Information Specialist for help.
What if I can’t find a nonprofit advocacy group?
If there are no nonprofit advocacy groups listed on our GARD website for your rare medical condition, please call a GARD Information Specialist if you would like help finding one. In some cases, a condition does not have a specific nonprofit advocacy group. The following online resources can help you search for other people with your diagnosis.
Social media sites can be a great way to connect with others, especially if a medical condition is very rare. You can try searching the condition name on Facebook to find a group. Other social media tools such as Twitter may also be options for rare and genetic conditions. Medical information that is suggested by others on social media is usually not reviewed by medical professionals, so we suggest that you discuss any medical recommendations with your doctor or another trusted medical care professional.
RareConnect has online communities for patients and families with rare medical conditions so they can connect with others and share their experiences. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).
Support for patients and families — GARD
04.00.02 Seven Ways to Embrace the PRP Community
Some PRPers will find their way to remission within a few years, some even sooner. Others must prepare for a much longer siege. No matter where you fall on the PRP Continuum, the journey begins anew today.
Here are the first seven steps on your journey.
1st: Read Frequently Asked Questions
Written by Lorna Roberts, a fellow PRPer and registered nurse, “Questions and Answers about Pityriasis Rubra Pilaris” has been the cornerstone of PRPer self-teaching since 2005. Her FAQs are grouped into six basic categories:
1.Description of PRP
3.Medication and Treatment
5.Day-to-Day Care and Information
The PRP FAQs are a quick read and easily digested by any PRPer or surrogate who has searched the Internet and grown weary of hard-to-decipher medical terminology or repetitive information too often citing the same sources.
2nd: PRP Worldwide Census
As a rare disease, PRP has a limited number of “subjects” from which to collect data. Often misdiagnosed with psoriasis (7.7 million Americans), there are only an estimated 972 PRPers in the U.S. It is critical that you submit your PRP Census form.
3rd: Register your PRP-Savvy Dermatologist
Take the few moments required to register any PRP-savvy dermatologist you may have encountered thus far, e.g, the one who diagnosed you and those who have provided ongoing treatment.
4th: PRP Community Newsletter Archive
Curl up with a beverage that your meds will allow and read all the newsletters in the PRP Alliance Newsletter Archives. You will have a better understanding of today’s PRP Community and where it is headed in the future. The PRP Community newsletter began on April 1, 2014 and currently publishes on the 1st and 15th.
5th: PRP Facebook Support Group
With nearly 250 members, the PRP Facebook Support Group is an absolute resource that cannot be ignored by any PRPer with a Facebook account. A “Request to Join” will be greeted with an enthusiastic “Yes” by Tierney Ratti, the “closed group”administrator. If you do not have a Facebook account, this might be the reason to take a second look.
6th: PRP Meet & Greet
Once the dust has settled and you feel you are ready, contact the PRP Alliance and confirm the concentration of PRPers in your area.
‣Greater San Diego, CA: 15 active
‣The Netherlands: 17 active
‣Greater San Francisco, CA: 6 active
‣New Zealand: 3 active
An email will be sent on your behalf and a Meet & Greet scheduled at a mutually agreeable time and place. It actually is that simple.
7th: Share Your Version of PRP
With a prevalence rate of one in 400,000, PRPers are at the very bottom of the rare disease food chain. We must not miss any opportunity to build awareness, cultivate understanding and motivate enlightenment. Consider four ways to share:
1.Share the efficacy of your treatment plan. What worked. What didn’t.
2.Share techniques and products that bring you relief from pain, itching, sleepless nights, depression and all the other tormenting manifestations of PRP
3.Share what you learn from fellow PRPers with your dermatologist. The only way we can stay on their radar is to rise above the noise level. Based on the allocation of funding, the folks with psoriasis, eczema and dermatitis are noisy indeed.
4.Share your medical records, blood and saliva for bona fide PRP-related medical research, clinical trails, etc. This is especially true when research will improve the timely diagnosis and successful treatment of PRP.
Embrace the PRP Community and
the PRP Community will embrace you
JOn the Road…une 25, SWISS EDition, Page 8,
04.00.01 Challenge of Living with PRP
While PRP is not life-threatening, it is absolutely life-altering.
The journey from onset through redemption is not a high-speed highway with a beautiful view. To the contrary, it can be a treacherous road of pain and discomfort, a seemingly endless series of hills and mountain-like barriers with road blocks and detours to impede your forward progress. The road traveled by every PRPer can be painful, lonely and a challenge to body, mind and spirit.
Twenty-four members of the PRP Facebook Support Group identified the challenges they have faced as adults with PRP or as parents of children with PRP. These challenges impact what is known as health-related quality of life or HRQOL.
✴Linda D (Enterprise, Alabama) shared the sentiments of many adults with PRP as well as PRP parents when she posted: “I wouldn’t say I am “living” with PRP, it is more like “existing” with PRP.
✴Brenda M (Kent, England, United Kingdom) agrees. “Living with PRPis no life, it could be described as as an all consuming round of effort to make oneself comfortable just in order to exist! Constant creaming whilst trying to preserve clothing, furniture, bedding etc.
✴Iris R. (Edinburgh, Scotland, United Kingdom), three years and four months into her journey explains, “I do not like going out but force myself everything seems to be an effort I would love to wear make up nail polish wedding ring nice clothes that were not ruined with ointment but I do see a slight improvement and this is enough to cheer me up and carry on.”
The content of the PRP Survival Guide will be driven by the needs of the PRP community. We must find more and better ways to address each of the challenges below and many yet to be listed.
1. Loss of routine
The “lengthy spell away from many of the things that impart quality to my life” is the challenge faced by Alan T (Scotland, United Kingdom). He laments forfeiting long walks in the country, keeping himself fit, practicing yoga and playing guitar and mandolin.
2. Life on hold
Feeling as if he has had to put his life on hold, Charlie O (Corpus Christi, TX) explains, “I sit in a prison of my own making waiting to return to the life I had to leave behind. I have had to drop out of school twice now and I fear remission will come too late. I lost the most productive part of my adult life.”
3. Lack of energy, lethargy
Some PRPers worry about being labeled “lazy.” Tierney R (Virginia Beach, Virginia) worries that people don’t seem to believe that her lack of strength is related to PRP and/or the medicines she takes for it.
There is the challenge of isolation. Troy M (Royal, Arkansas) admits that he is afraid to go out in public because he doesn’t know what other illnesses he will get from other people. “I live my life at home and it is very hard on me because I want to be able to do things with my wife and grandchildren that I can’t. “
5. Reliance on family support
Isolation also creates a need for family support with its own set of challenges. Troy M (Royal, Arkansas) speaks for many. “Some days are worse then others but my wife is right by my side. She tries to make things better for me. My wife does everything. She takes care of me, our grand daughter and she doeall the cooking and everything that I can’t do. So I am so thankful I have her in my life and she has been my ROCK.”
6. Daily struggles
Living with PRP is an ongoing challenge. For some it is the constant application of creams and ointments while trying to keep the house clean. For others it’s opening jars or preparing meals.
✴Meagan W (San Luis Obispo, California) feels sick, tired and depressed most of the time. “I am frustrated by time consuming routines which seem to make little difference. Just getting dressed in the morning is a struggle…nothing feels comfortable.”
✴Linda D (location) agrees. “Looking fairly good one day and encouraged that it’s getting better and the next day back to square one. It is hard to see where we are in the healing process. Not knowing what the heck I will look like when this fades. So far, I feel like the past 10 months of my life has been wasted, then I see photos or hear stories of others and realize…I have many blessings. What a roller coaster ride!”
✴Kev H (Blackpool. England, United Kingdom) thinks of PRP as the “Cinderella Disease.” “I am cursed with constantly vacuuming, dusting, mopping, cleaning sheets, cleaning clothes and that’s before you include the application of emollients several times a day.
7. Being uncomfortable
A complete lack of comfort is the biggest challenge facing Gena Hubach (Merced, California). “I cannot sit, stand, lay, shower, wear clothes, drive, vacuum, work or anything without being uncomfortable! The itch is intense and unending! Also unending are the sores, tender areas, areas where skin has been scratched or rubbed off, tender fingers, dry, painful eyes, sores in my ears, etc.
8. Self esteem
Many with PRP struggle with self-esteem. Claire G (Mariposa County, Arizona), for example, hated looking at herself in the mirror every morning “I just couldn’t believe it was happening to me and for a long time, getting worse every day.” While in the acute stage, Leanne C (location ) didn’t want to see anybody. “I just wanted to look normal and not have to spend all day wondering how bad this was going to get.”
9. Managing meds
For many, on the ongoing treatment of PRP is a challenge. Karen Bu (Mold, North Wales, United Kingdom) asks, “When do I stop taking methotrexate? My PRP is definitely getting better, but I still have spots, blotches and peeling. My dermatologist recommends patience, and I do not want the PRP to come back, but I would love to be drug free.
Challenges facing parents and children with juvenile onset
Children with juvenile onset PRP and their parents face challenges together
✴Christine G (Zürich, Switzerland) — “For my PRP child, a major challenge is always being asked “Why is your skin so red?” She knows that “mummy” and “daddy” worry about he PRP. She knows that mummy is a constant pain in the neck with all the moisturizing and hands washing! Our Molly is six. There will be more challenges when she will be a teenager. For me as a mum, it’s the staring and being afraid of Molly’s future. It was so hard to see our child suffering when PRP was very bad, itchy and painful.”
✴Sarah R (North Yorkshire, England, United Kingdom) — “My challenge is trying to be normal in front of the kids. I hope that the panic inside of me isn’t so visible that the kids worry about my health. That was most definitely the case in the earlier days. PRP has affected them, especially the youngest who now panics when I have a hospital appointment or sudden headaches.”
✴Malgorzata K (Oborniki, Poland) — “My son has no idea that he is really sick. He is starting kindergarten on September, (2015). I informed teachers, school nurse and will provide his cosmetics like in kindergarten. Children and their parents know that he has some skin problems but most think that it`s an allergy. I told him that some kids can`t eat some fruit. He has got skin problems. Only once has he asked me, ‘Mum why my hands aren`t smooth?’”
OTHER PRP-RELATED CHALLENGES
There are as many more challenges facing the PRP community, both young and old.
Some PRPers want to to be employed, but can’t. Others face physical limitations that make “returning to my old job” impossible or impractical.
✴To sleep or not to sleep
Some PRPers can’t sleep, others can’t stay awake. It’s like fingernails — some of us lose them (they always seem to return) while others watch them get thick
✴Mental health issues
Somewhere on the journey from onset to redemption, PRPers must deal with anxiety and depression. Now in remission, Chelsea B (Spokane, WA) remembers “the constant itching, burning and flaking. Being physically and emotionally miserable every day was the hardest part. There are so many reasons why depression can become an issue.”
Always watching for complications and worrying about whether our skin needs medical attention or extra care.
✴The paradox of remission
Beating the odds and going into remission in less than two years can create mixed emotions. Eric S (San Luis Obispo, California) knows he was one of the lucky few that have made it out of “this mess fairly unscathed” but ponders those who are no a lucky.
Sharing what we know About living with prp
All the challenges facing the PRP community need our attention. We need to find better ways to cope and more skillful in sharing coping techniques with others. The PRP Survival Guide will hopefully provide a channel of communication.
As published in On the Road …July 2015