PRP Survival Guide

Accept the fact: We are fragile.

How is malware related to PRP and coping strategies?  Let me try to explain. By the way — reading this article will NOT cause a malware attack.

It was a dark and stormy night (two weeks ago) when a member of the PRP Facebook Support Group posted a question about the efficacy of 35% food-grade peroxide for PRP sufferers. I found a PDF about the topic and clicked the link. A pop-up message informed me that I needed to update to the latest version of Adobe.

I should have known better, but I really wanted to read the PDF on 35% food-grade peroxide. When I clicked the link, the  computer was immediately infected by malware. A message appeared:  WARNINIG! I was given the given an opportunity to click for help or call for help. I did both.

You have probably heard the expression, “All roads lead to Rome”? In my case with this malware attack, all roads led to the dirtbag or bags responsible for the unexpected appearance of malware on my iMac. Imagine someone who throws a brick through the back window of you car and, moments later, rings your doorbell and offers you window repair services.

The impact of the malware attack was profound.

  • Writing new articles for the PRP Survival Guide became increasingly painful. But I persisted.
  • A three-minute effort to correct a simple “typo” could take 30 minutes. But I persisted.
  • Every visit to a third-party website, like the Genetic and Rare Diseases Information Center, unleashed a flurry of “Fix-Your-Computer” announcements. But I persisted.

Today the malware went into overdrive. It wouldn’t allow me log on to the PRP Survival Guide.  

Then it got even worse. When I tried to look up an Apple repair service in Plano, Texas, the malware intercepted those efforts and bogus screens would appear — screens that looked like legitimate Apple support services but had the dirtbag’s telephone number. 

In desperation I decided to call a nearby Apple Store on my iPhone. In less than 2 minutes I was routed to Jose, a Senior Tech Advisor for Apple. He was the real deal. It was a like finding a dermatologist who is familiar with PRP. A sigh of relief, a glimmer of hope.

I told Jose my story of woe. Since my iMac was registered with Apple, he was able to SEE my screen and guide me — step by step. Within a few minutes we had installed Malwarebytes Anti-Malware software. A few minutes later my computer was squeaky clean. Even better, NO COPAY, I mean no charge. 

So, what does this have to do with PRP?

My malware attack reminded me how fragile we are — whether  “active” or “in remission”.  How easy it is for forces beyond our control to impact the daily challenges of body, mind and spirit we endure. Too often that extra and unexpected burden is more than we can bear.

  • A red spot that thankfully turned out to be a an abscess — unrelated to PRP. 
  • A copay that exceeds a PRP patient’s budget — a new hurdle to face and overcome.   
  • Edema that makes walking impossible for an adult. One more aindignity in a litany of indignities. 
  • Cracked and bleeding feet that make walking too painful for a child while Mum would gladly switch places in a heartbeat.
  • The unexpected unavailability of acitretin — a medication that was working.

Every PRP patient and caregiver is vulnerable to attack from forces over which we have little or know control.  We must find ways to cope with this metaphorical malware. 

  • Reach out to your dermatologist or other healthcare professionals. Don’t suffer alone.
  • Reach out to a worldwide PRP community eager to share experiences and insights. Don’t suffer alone.
  • Reach out to the PRP Survival Guide for answers to questions. Don’t suffer alone.

Don’t suffer alone. Reach out.