EDITOR’S NOTE:
While PRP is not life-threatening, it is absolutely life-altering.
The journey from onset through redemption is not a high-speed highway with a beautiful view. To the contrary, it can be a treacherous road of pain and discomfort, a seemingly endless series of hills and mountain-like barriers with road blocks and detours to impede your forward progress. The road traveled by every PRPer can be painful, lonely and a challenge to body, mind and spirit.
Twenty-four members of the PRP Facebook Support Group identified the challenges they have faced as adults with PRP or as parents of children with PRP. These challenges impact what is known as health-related quality of life or HRQOL.
✴Linda D (Enterprise, Alabama) shared the sentiments of many adults with PRP as well as PRP parents when she posted: “I wouldn’t say I am “living” with PRP, it is more like “existing” with PRP.
✴Brenda M (Kent, England, United Kingdom) agrees. “Living with PRPis no life, it could be described as as an all consuming round of effort to make oneself comfortable just in order to exist! Constant creaming whilst trying to preserve clothing, furniture, bedding etc.
✴Iris R. (Edinburgh, Scotland, United Kingdom), three years and four months into her journey explains, “I do not like going out but force myself everything seems to be an effort I would love to wear make up nail polish wedding ring nice clothes that were not ruined with ointment but I do see a slight improvement and this is enough to cheer me up and carry on.”
The content of the PRP Survival Guide will be driven by the needs of the PRP community. We must find more and better ways to address each of the challenges below and many yet to be listed.
1. Loss of routine
The “lengthy spell away from many of the things that impart quality to my life” is the challenge faced by Alan T (Scotland, United Kingdom). He laments forfeiting long walks in the country, keeping himself fit, practicing yoga and playing guitar and mandolin.
2. Life on hold
Feeling as if he has had to put his life on hold, Charlie O (Corpus Christi, TX) explains, “I sit in a prison of my own making waiting to return to the life I had to leave behind. I have had to drop out of school twice now and I fear remission will come too late. I lost the most productive part of my adult life.”
3. Lack of energy, lethargy
Some PRPers worry about being labeled “lazy.” Tierney R (Virginia Beach, Virginia) worries that people don’t seem to believe that her lack of strength is related to PRP and/or the medicines she takes for it.
4. Isolation
There is the challenge of isolation. Troy M (Royal, Arkansas) admits that he is afraid to go out in public because he doesn’t know what other illnesses he will get from other people. “I live my life at home and it is very hard on me because I want to be able to do things with my wife and grandchildren that I can’t. “
5. Reliance on family support
Isolation also creates a need for family support with its own set of challenges. Troy M (Royal, Arkansas) speaks for many. “Some days are worse then others but my wife is right by my side. She tries to make things better for me. My wife does everything. She takes care of me, our grand daughter and she doeall the cooking and everything that I can’t do. So I am so thankful I have her in my life and she has been my ROCK.”
6. Daily struggles
Living with PRP is an ongoing challenge. For some it is the constant application of creams and ointments while trying to keep the house clean. For others it’s opening jars or preparing meals.
✴Meagan W (San Luis Obispo, California) feels sick, tired and depressed most of the time. “I am frustrated by time consuming routines which seem to make little difference. Just getting dressed in the morning is a struggle…nothing feels comfortable.”
✴Linda D (location) agrees. “Looking fairly good one day and encouraged that it’s getting better and the next day back to square one. It is hard to see where we are in the healing process. Not knowing what the heck I will look like when this fades. So far, I feel like the past 10 months of my life has been wasted, then I see photos or hear stories of others and realize…I have many blessings. What a roller coaster ride!”
✴Kev H (Blackpool. England, United Kingdom) thinks of PRP as the “Cinderella Disease.” “I am cursed with constantly vacuuming, dusting, mopping, cleaning sheets, cleaning clothes and that’s before you include the application of emollients several times a day.
7. Being uncomfortable
A complete lack of comfort is the biggest challenge facing Gena Hubach (Merced, California). “I cannot sit, stand, lay, shower, wear clothes, drive, vacuum, work or anything without being uncomfortable! The itch is intense and unending! Also unending are the sores, tender areas, areas where skin has been scratched or rubbed off, tender fingers, dry, painful eyes, sores in my ears, etc.
8. Self esteem
Many with PRP struggle with self-esteem. Claire G (Mariposa County, Arizona), for example, hated looking at herself in the mirror every morning “I just couldn’t believe it was happening to me and for a long time, getting worse every day.” While in the acute stage, Leanne C (location ) didn’t want to see anybody. “I just wanted to look normal and not have to spend all day wondering how bad this was going to get.”
9. Managing meds
For many, on the ongoing treatment of PRP is a challenge. Karen Bu (Mold, North Wales, United Kingdom) asks, “When do I stop taking methotrexate? My PRP is definitely getting better, but I still have spots, blotches and peeling. My dermatologist recommends patience, and I do not want the PRP to come back, but I would love to be drug free.
Challenges facing children with juvenile onset and their parents
Children with juvenile onset PRP and their parents face challenges together
✴Christine G (Zürich, Switzerland) — “For my PRP child, a major challenge is always being asked “Why is your skin so red?” She knows that “mummy” and “daddy” worry about he PRP. She knows that mummy is a constant pain in the neck with all the moisturizing and hands washing! Our Molly is six. There will be more challenges when she will be a teenager. For me as a mum, it’s the staring and being afraid of Molly’s future. It was so hard to see our child suffering when PRP was very bad, itchy and painful.”
✴Sarah R (North Yorkshire, England, United Kingdom) — “My challenge is trying to be normal in front of the kids. I hope that the panic inside of me isn’t so visible that the kids worry about my health. That was most definitely the case in the earlier days. PRP has affected them, especially the youngest who now panics when I have a hospital appointment or sudden headaches.”
✴Malgorzata K (Oborniki, Poland) — “My son has no idea that he is really sick. He is starting kindergarten on September, (2015). I informed teachers, school nurse and will provide his cosmetics like in kindergarten. Children and their parents know that he has some skin problems but most think that it`s an allergy. I told him that some kids can`t eat some fruit. He has got skin problems. Only once has he asked me, ‘Mum why my hands aren`t smooth?’”
OTHER PRP-RELATED CHALLENGES
There are as many more challenges facing the PRP community, both young and old.
✴Unemployment
Some PRPers want to to be employed, but can’t. Others face physical limitations that make “returning to my old job” impossible or impractical.
✴To sleep or not to sleep
Some PRPers can’t sleep, others can’t stay awake. It’s like fingernails — some of us lose them (they always seem to return) while others watch them get thick
✴Mental health issues
Somewhere on the journey from onset to redemption, PRPers must deal with anxiety and depression. Now in remission, Chelsea B (Spokane, WA) remembers “the constant itching, burning and flaking. Being physically and emotionally miserable every day was the hardest part. There are so many reasons why depression can become an issue.”
✴Vigilance
Always watching for complications and worrying about whether our skin needs medical attention or extra care.
✴The paradox of remission
Beating the odds and going into remission in less than two years can create mixed emotions. Eric S (San Luis Obispo, California) knows he was one of the lucky few that have made it out of “this mess fairly unscathed” but ponders those who are no a lucky.
Sharing what we know About living with prp
All the challenges facing the PRP community need our attention. We need to find better ways to cope and more skillful in sharing coping techniques with others. The PRP Survival Guide will hopefully provide a channel of communication.
As published in On the Road …July 2015