Our Story

Our Story

This is our story … how the PRP Support Group was formed …

“I have been diagnosed with a very rare skin disease. If anyone in the world knows of any other treatment besides Tegison, Methotrexate and Soriatane, please contact me. Please help.”

This S.O.S. was being displayed in Internet newsgroups worldwide by people suffering from Pityriasis Rubra Pilaris (PRP). And they were not only suffering from the physical upheaval of a skin disease which leaves you in turns, manic from the uncontrollable itching, flaking and pain, and desperately exhausted from the hyper-production of skin cells, but emotionally destitute from the belief that your body is coming apart, beginning with your skin.

In early ’96, there just wasn’t anything ‘out there.’ Nothing to do but scratch as you waited at your computer terminal for some sign, some message. Nothing to do but wait for the disease to ‘run its course.’ Nothing to do but try again; send another message.

And then someone posted a message about a friend of his (Trigers), who had a rare and ‘terrible’ skin disease. This is how Alex (mladeineo) and Andrew found each other. They began a friendship through mutual suffering which has transcended the barriers of language, race and age.

March 1996. Neil Davidson buys a computer and gets ‘online’. He has had PRP for 29 long and lonely years; accustomed to being ‘alone’ with the disease, but still tenacious in his search for others who ‘know’. He discovers newsgroups, and begins searching in earnest. There were no PRP newsgroups, but several for Psoriasis. Since many of the treatments are the same for both diseases, Neil joined a Psoriasis newsgroup and began posting messages asking “Does anyone out there have PRP?”

More waiting — it seems this is overwhelmingly what PRPers do. Wait for diagnosis. Wait for the meds to take effect. Wait for answers.

Says Neil; “For a long time there was no response.” Then, in June of ’96, Neil finds a posting from Tom, who is a friend of Andrew’s. Tom is conducting a search of his own in the hopes of finding help for his friend. Would that the world was full of friends like this. Neil responds to the posting, and sits back to wait. Eventually, he receives a short email from Tom.

“To say that I was absolutely thrilled would be an understatement! I fired back at least a hundred questions straight away. It was great, suddenly there was someone else who knew how I felt.”

An understatement indeed — but how else can you possibly describe what it feels like to find others who understand exactly what you have been going through, because they have gone through it themselves? You become connected, and not just through the technological wonder of the Internet. Suddenly, you are no longer alone. And suddenly, the days are that much easier to bear.

“What a small world.”

Jean-Luc Deslauriers (mdetjld) received his first email from the fledgling group in late October ’97. He was saddened by the overwhelming depression within the group, and so he enlisted the help of Max Spiller (The Merry Mice), with whom he was already in contact, to join. Jean-Luc felt that Max’s joi de vivre could inspire some much needed hope.

“I remember during that period I kept working on the computer till 5:00 in the morning and did not sleep more than three hours a night — I just could not lie down because the skin was hurting too much,” said Jean-Luc.

Max responded.

“It was not the end of the world for me . . .” not the end of the world, rather, the blossoming of a new one. A world comprised of people who cared, people who empathised, and people who were willing to give freely of their time in order to help others. Soon, Jeremy joined up via a posting in a Psoriasis newsgroup from Jean-Luc, proclaiming the birth of a PRP support group. And in the meantime, there were 16 people already contributing advice, concern and empathy.

The group was growing beyond each member’s dreams, and it was decided an official webpage was needed, along with a group email list — it was becoming quite an adventure to cc individual members! Jeremy, who worked for an Internet service provider, offered to set up a group email list; Max, Tracie and Jean-Luc concentrated on the website.

“Thank God I found you . . .”

The first person to ‘surf’ onto the official site was Laurie Zwickey. And then others found the ‘family’ through the direction of the Foundation for Icthyosis and Related Skin Types (F.I.R.S.T.), thanks to the efforts of Elise Johnson ; via the National Organisation of Rare Disorders (NORD), and with the help of all the friends and family who saw what their loved ones were going through and wanted to help . . .

What was originally a desperate cry for help in a newsgroup, became a glowing and still growing unit of people dedicated to helping their ‘fellow human beings.’ It is a family enriched with all of the things families take such pride in, and comfort from. There are arguments, debates and ‘hot tempers,’ but through it all, there is a constant — unity. “I” has become “Us.”

Jean-Luc said it best when he described his feelings about his fellow PRPers:

“They had provided me with the best medicine in the world.”

Love. Care.

© Elizabeth Nadler 1998