It took 16 weeks for a dermatologist and a dermatopathologist to agree on my diagnosis: pityriasis rubra pilaris. A few days later I began a daily regimen of acitretin and  physically exhausting “slatherings” of Clobetasol® and urea lotion (palms and soles), Desonide® (face and ears) and triamcinolone in ALL the remaining nooks and crannies.

In the background I could hear Willie Nelson singing “On the Road Again”.

Then came the questions from family, friends and neighbors who showed empathy and concern.

Having retired after 40 years in publishing, marketing communications and public relations, I knew instinctively to control my narrative. I wanted everyone to know what was coming down the road, but not everything. I wanted to share!

I needed a 30-second  response to tell my PRP story and control the narrative. In sales and marketing, the “Elevator Pitch” is a communication device that lasts no longer than a short elevator ride of 20 to 30 seconds, hence the name.

Here are four sentences that you say with confidence whenever the occasion arises.

“I have a rare skin disorder that is  not contagious.”

RARE — It is important to get the word “rare” up front.

DISORDER — Use “disorder” rather than “disease” or “condition”.

NOT CONTAGIOUS — confirm that your disorder is “not contagious”.

“It’s called pityriasis rubra pilaris, but we call it PRP.”

PRP — Say “pityriasis rubra pilaris” slowly and you won’t have to say it again.

“There are only an estimated (insert number) of us in (country) and (insert number) in (state, province or region).”

KNOW YOUR NUMBERS — In my case, for example, I would say, “There are only an estimated 832 of us in the United States and less than 74 in Texas.” Divide population by 400,000.

“PRP impacts…”

YOU DECIDE WHAT TO SHARE — Here’s where you decide what to share. Your response will be different for family and friends versus neighbors versus co-workers and employers. Everyone relates to the pain of a burn. My go to phrase was :  Imagine a sunburn that covers your entire body from head to toe, for years.

Control the narrative from the very beginning. Even if you find yourself in the STARE of a passerby in Walmart. They aren’t being rude — they are just curious.

If close enough to have your words heard — make eye contact, smile and say: “I have a rare skin disorder that is not contagious.”

Remember — this is the beginning of a 30-second response that you have ready to go. There’s nothing to ponder. In the Marine Corps when calling in artillery, we would say, “Fire For Effect!”

When the occasion arises, FIRE FOR EFFECT.