IThe PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment.

Our emotional health is every bit as important as our physical well-being, and you cannot separate the two. When you are dealing with any disease, it is difficult to be your natural optimistic self. When dealing with an appearance-altering and physically debilitating disease like PRP, it’s many times more difficult.

• Find your support system…it may already be in place.
• Talk with the friends and family members you can trust to best understand your ordeal.
• Watch for signs and symptoms of depression and have others watch for them also seek counsel from your doctor about medications if the feelings of depression cannot be shaken off and become a burden to you.

Always remember that you are not alone. There are many of us out here with PRP, and we are all going through the same experiences that you are. Joining the PRP Facebook Support Group and sharing is of utmost importance. Only someone who has walked in your shoes can truly understand how you feel.

• Share what you have learned about PRP as a patient or caregiver.
• Share what you have been told by your dermatologist?
• Share articles  you feel might be worth reading or websites worth visiting.

Please forward whatever you want to share to editor@prpSurvivalGuide.org.

Create link to: Depression and Mental Sadness

Bill M — Plano, Texas

IMHO — Dermatologists should EXPECT that a PRP patient will benefit from professional counseling. A referral to a mental health professional (name and contact information) should be part of every PRP Treatment Plan. The dermatologist should also be identifying other healthcare professionals that PRP patients are likely going to need.

• • Ear specialist
  • Opthamologist
  • Podiatrist

A PRP patient or caregiver should not be surprised “down the road” with a problem that is likely to need more expert care than a dermatologist can offer. The dermatologist can manage expectations by being honest with their patient.

And while they are at it, how about a referral to the Genetic and Rare Diseases (GARD) information Center where they will be be ab;e to access the GARD PRP Report that includes important references to the PRP Appliance and the National Organization of Rare Disorders.

The NORD PRP Report is essential reading for every newly diagnosed PRP patient and their caregiver(s). Follow the bread crumbs and “newbies” will be able to connect with the  PRP Facebook Support Group and a link to the PRP Survival Guide.