When moisturizers cake


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

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

Steven C — Glenrothes, Scotland, UK
Peanut oil

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When moisturizers cake

 

Should the PRPA join the Autoinflammatory Alliance?

The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. The PRP Survival Guide has signed up for the Autoinflammatory Alliance newsletter.

LEARN MORE about Autoinflammatory Alliance

 

Should the PRPA join the Autoinflammatory Alliance?

AARDA: PRP is not an autoimmune disease

From the Editor…
If pityriasis rubra pilaris is, in fact, an autoimmune disease, then joining the American Autoimmune Related Diseases Association would seem like an appropriate path forward. It was on this basis that I approached the AARDA in 2015 intent upon having the PRP Alliance become a member organization.  It became clear, however, that it was the view of ARRDA that PRP was NOT an autoimmune disease. It should be noted that the National Psoriasis Foundation agrees. 

According to the AARDA…

“The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical, and efficient manner.

“AARDA is the only national nonprofit health agency dedicated to bringing a comprehensive focus to autoimmunity, the major cause of over 100 serious chronic diseases. Approximately 50 million Americans — or one in five people — suffer from autoimmune diseases. Women are more likely than men to be affected; some estimates say 75% of those affected are women. Still, autoimmunity is rarely discussed as a women’s health issue.

“An autoimmune disease develops when a person’s immune system mistakenly identifies healthy cells as foreign cells and attacks them. There are over 100 known autoimmune diseases. Most of these are known by their singular names, but the public is generally unaware of their autoimmune nature. This makes it difficult to raise awareness of autoimmune diseases as a whole.

Many people also confuse the term autoimmune with acquired immune deficiency syndrome (AIDS), or they think these diseases are a form of cancer.

Editor’s Note: Skin disorders considered to be autoimmune include:

✽  Psoriasis
✽  Psoriatic arthritis
✽  Bechet’s disease
✽  Bullous pemphigoid
✽  Dermatitis herpetiforms
 Dermatomyositis
✽  Lichen planus
✽  Lichen sclerosus
✽  Pemphigus
✽  Psoriatic arthritis
✽  Vitiligo

 

Mid-November Issue of On the Road… available

The mid-November issue of the PRP community newsletter was just emailed to 1,009 PRP patients/caregivers. If you didn’t receive an email from me, then (1) you either don’t have your email address listed in the PRP Community Database, (2) or the email address we have is undeliverable, or the newsletter ended up in “junk mail”.

Please click SUBSCRIBE and receive your copy of On The Road…Our Journey from Onset to Remission

 

As a matter of policy, your email address will NOT be shared with any third parties AND you can unsubscribe at anytime. Remember, we’re family.

otr26 Mid-November Issue of On the Road... available

 

Ichthyosis Registry

Now is the time to GET DIAGNOSED and join FIRST in playing an important role in ichthyosis research. FIRST is co-sponsoring a transformational scientific endeavor with one of the world’s leading institutions in ichthyosis research, Yale University. We encourage you to take part.  The National Registry for Ichthyosis & Related Skin Disorders, “The Registry,’ is available to investigators worldwide, and is the largest resource of ichthyosis patient information – critical data that holds the key to better, more targeted treatments, and eventual cures. The Registry, co-sponsored by FIRST is the next evolution of ichthyosis research.

Now is the time to get diagnosed, join The Registry and the new GENEration, and play your part in unlocking the future of ichthyosis research. Find out more at National Registry for Ichthyosis and Related Skin Disorders Frequently Asked Questions.  Or, to participate, please email the Registry’s Patient Coordinator Theodore Zaki at theodore.zaki@yale.edu or call the Yale lab at (203) 785-5364. It’s a simple process and does not require traveling to Yale. A member of the team will promptly respond.

 

Frequently Asked Questions

What is a Registry?

People living with a rare disease are a critical component of the research process. Without patients and families voluntarily providing detailed insights into their rare disease, researchers may be missing information that is vital to unlocking scientific puzzles that may lead to new treatments.  In the rare disease community, patient registries are especially valuable to gather this critical information because in most cases, very little is known about a particular condition.

The purpose of The Registry is to enroll people with ichthyosis to characterize their specific type of ichthyosis using defined descriptions, and to collect information about enrollees in order to advance understanding of the diagnosis, causes, and treatment of the disorders.

How can pityriasis rubra pilaris (PRP)  be included in the Ichthyosis Registry? How does Yale reconcile the fact that pityriasis rubra pilaris is NOT ichthyosis. Pityriasis rubra pilaris (L44.0) is an autoinflammatory disorder that falls under ICD-10 L00-L99: Diseases of the skin and subcutaneous tissue. In contrast, ichthyosis appears under ICD-10 Q00-Q99: Congenital malformations, deformations and chromosomal abnormalities.

How is FIRST involved? 

FIRST plays a pivotal role in The Registry. As a co-sponsor, FIRST is providing support and resources to ensure The Registry is managed, sustained, and utilized to its fullest capability. FIRST resources will support the principal investigator of The Registry, Dr. Keith Choate, and many of the functions in his laboratory at Yale University. FIRST will also allocate resources to encourage our members to enroll in The Registry and receive a genetic diagnosis.  FIRST will also support outreach to research investigators and health organizations who specialize in ichthyosis and related skin types, to utilize The Registry’s many benefits.

Why enroll in this registry?

A registry is the cornerstone to research.  Investigators working within a certain track of medical research will have access to the patient data they need to experiment, discover, and achieve medical breakthroughs. Without patient registries, the process of scientific discovery in medical treatments can be slowed, halted, or even dismissed. Studies of these disorders may take years to finish, however if a cause is found, investigators may be able to develop better tests and treatments in the future.  Participating in a registry is one of the most direct ways to participate in the future treatment and possible cures for your skin disorder.

What if I already enrolled in the Yale Disorders of Keratinization Research Project, can they use my information for The Registry? 

Yes, however your file may need to be updated or more information may be needed. When contacting Yale for more information, be sure to inform them when you were tested and/or diagnosed.

Who can access The Registry?

Investigators from universities or pharmaceutical companies interested in ichthyosis can make an application to the registry. If the proposed study has appropriate protection for human subjects and is approved by the registry advisory committee, investigators will be permitted to contact enrollees to inform them of the study opportunity. Participation in future studies is optional and you can choose which, if any, studies to join. Your information will not be transferred to these investigators. The Registry will function solely to inform you of studies relevant to your skin condition.

If I have a diagnosis from another laboratory or institution, should I still participate in the Registry? 

Yes. When contacting Yale for more information, be sure to inform them of where, when, and with whom you were diagnosed.

What does it cost to get diagnosed and be part of the registry? 

There is no cost for participating in The Registry. If you do not already have a laboratory diagnosis, Dr. Choate’s lab will perform the DNA testing under his research funding at no cost to you/your insurance.

Do I need to travel to Yale University to participate?

We will work with you/your physician to obtain all relevant medical records and consents via email or fax. Any costs of shipping will be covered by us.

How do I get diagnosed and join The Registry?

To participate, please email the Registry’s Patient Coordinator – Theodore Zaki, theodore.zaki@yale.edu or call the Yale lab at (203) 785-5364. It’s a simple process and does not require traveling to Yale. A member of the team will promptly respond.

 

ReadyTalk Meet & Greet Planner

 

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

Step 1: Select a day

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

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

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

PRP Ready Talk Schedule

SATURDAY, DECEMBER 25

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

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


Rare Skin Disease Referral Initiative Update

What is the Basic Problem to be Solved?

When a patient is diagnosed with pityriasis rubra pilaris (PRP), the dermatologist — with very rare exceptions — does not refer their patient to the PRP Alliance, PRP Survival Guide, PRP Facebook Support Group, or the PRP Community on RareConnect. Typically, the patient is referred to the internet where search engines (Google, Yahoo) retrieve information that can be redundant, insufficient, outdated, and written for an audience of healthcare professionals— not patients and their caregivers.

With an estimated 574 rare skin diseases inflicting pain and suffering, it is absolutely unreasonable to expect healthcare professionals to keep track of disease-specific patient support organizations and other patient-centric resources for rare diseases like PRP.

What is the Solution?

The solution is actually quite simple. When a patient is diagnosed with a rare skin disease (less than 200,000 effected patients in the US), the standard therapy should include two referrals that are recorded in the patient’s electronic medical record:

✽  Genetic and Rare Diseases Information Center (GARD)
✽  National Organization of Rare Disorders (NORD)

What Do GARD and NORD Accomplish?

Reliable information about rare or genetic diseases is often hard to find. GARD and NORD offer patients with a rare skin disease — and their caregivers — a reliable roadmap to the resources they need.

✽  GARD website

✽  GARD Rare Disease Database  (SEE GARD PRP Report, Revised 11/2017)

✽  GARD Patient, Families and Friends

✽  GARD Information Specialists — Whether by phone, fax or email, the public has access to current, reliable, and easy-to-understand information in English or Spanish. Toll-free Telephone: 888 205-2311; Email: GARDinfo@NIH.gov/

✽  NORD Website

✽  NORD Rare Disease Database — SEE NORD PRP Report

Step One — Jump Start the Campaign

The Rare Skin Disease Referral Initiative is a year-long campaign that began with the mailing of an “Advocacy Packet” to the following:

TEACHING HOSPITALS

✽  Leadership (Chairs) of the dermatology departments at 88 teaching hospitals in the U.S.

ORGANIZATIONS

✽  American Academy of Dermatology
✽  Society of Dermatology Physician Assistants
✽  Dermatology Nurses’ Association

MEDIA

✽  Dermatology Times
✽  The Dermatologist
✽  Dermatology News

The first salvo of “advocacy packets” was funded by members of the the PRP Facebook Support Group and included the following components. Click the link to see what recipients received.

✽  Cover Letter
✽  Factsheet
✽  GARD brochure
✽  NORD PRP Report — reprinted with permission fs

Step Two — AAD Annual Meeting

The next step in the promotion of the Rare Skin Disease Referral Initiative is to take full advantage of the American Academy of Dermatology annual meeting to be held in San Diego, CA. (February 16-19). The PRP Alliance will be attending the four-day event as a member of the Coalition of Skin Diseases with access to dermatologists, dermatology physician assistants, dermatology nurses and 300-plus exhibitors who sell products and services to dermatologists for patient care.

Step Three — The Hard Work of Advocacy

The third step (March-October, 2018) depends on who will join the effort.

✽  Will it be patients and caregivers who tell their dermatologists about GARD and NORD?
✽  Will AAD, DNA and SDPA tell their members?
✽  Will Dermatology Times, The Dermatologist and Dermatology News publish articles about the Rare Skin Disease Referral Initiative?

For the moment, we will focus on Step 2 and see what can make happen in San Diego.

OTR26 Rare Skin Disease Referral Initiative Update