PRP Survival Guide

Editor’s Note:  Christine Günther is a PRP parent. Her daughter Molly was diagnosed with juvenile onset PRP in the fall of 2013 .  At the time, we were both members of the PRP Support Group and traded a few emails.
Christine was overwhelmed by PRP and receptive to any advice that would help her cope with this unexpected skin disorder. She was nearly immobilized by fear and concern for her child. What Mum wouldn’t be?

Many months went by until the spring of 2014 when a totally different Christine re-emerged. She was confident, enlightened and engaged with her dermatology team. In fact, during the summer of 2014, she and Molly participated in a Grand Rounds in Zürich at the Children’s Hospital. At that time she made a PowerPoint presentation to nearly 50 dermatologists.
Since then, Christine has become active as a co-moderator for the PRP Community on RareConnect and is a frequent participant in PRP Facebook Support Group chatter.
The following letter (February 6, 2017) provides a overview of PRP parenting that is “must reading” for anyone who has a wee one with PRP. But remember…

Zürich, Switzerland June 1, 2017
Fellow PRP parents

Please be aware that the following advice is meant to be serious, even when that advice might sound like super-dark humour in the first moment. My comments are based on a four-year experience (fast approaching the fifth year). It has been a bumpy PRP ride with an awesome eight-year-old daughter who is dealing with her version of PRP in such an exemplary way! If I was a “newbie” PRP parent, I would give myself a huge “comfy” hug and consider the following:

  • First of all: STAY CALM. Your child and you will survive PRP. That may seem unbelievable at the moment, I know, but you will!
  • When you have to “freak out” – and you will have to do it from time to time – choose a child-free moment. Once a grown-up PRPer with juvenile onset told me that the worst time for her was when she heard her mother crying in the bathroom because she was so desperate about PRP and how much her daughter has to suffer.

We don’t want to frighten our kids or made them feel sad or guilty. We cannot protect them from everything, but we can do our best or at least try. We are just human and far away from perfect. It’s what makes us human. So, in case you are unable to hold back your tears, I would suggest the following moments and places for a healthy breakdown. Letting go of the pressure is healthy even in the form of tears: kid-free time, cellar, attic, while taking a shower, bathroom, or while unloading the washing machine or any other place you feel unobserved or in the terrible need of letting go of the pressure.

  • Accept the diagnosis of juvenile onset PRP and deal with it. Don’t fight against it because you will lose. Save your energy for supporting your child. As soon as you make this decision mentally, life will be so much easier. Moreover, your child will feel much more relaxed too because he or she feels that you are relaxed. Your child will be your “mirror” and will show you how you dealing with PRP.
  • Join the PRP Facebook Support Group and the PRP Community on RareConnect. Get in touch with other PRP patients and their caregivers. Learn from other PRP parents and learn from adults who have grown up with juvenile onset PRP. Learn, care and share — it will help you to survive the darkest hours and feeling happy in the lightest moments.
  • You will see many scary pictures of how PRP looks. Don’t worry too much. Your child will have its very individual version of PRP and you will learn how best to deal with it.
  • Ask your dermatologist in case you have questions (and you will have many for sure). Make sure that your dermatologist and your paediatrician are in contact with each other.
  • Ask as many questions as you can. Don’t hesitate. It is your child and you NEED to know everything to make the right decisions.
  • You will learn a great deal about medical stuff and different kind of drugs. It is scary first, but you will get used to it. I promise!
  • When you talk to other non-PRP parents, they won’t probably have any clue what you are talking about. It sometimes feels like PRP catapults us into a parallel universe. Remember, you can always reach out to other PRP parents who definitely understand what you are talking about.
  • You will get tons of advice about creams, diets and drugs from PRP unexperienced and mostly well-meaning peoe. Believe me, they have no clue. Listen. Smile. Think about what they say. Use what you think is useful and forget the rest.
  • Your dermatologist will also recommend some super scary drugs to you, drugs you have never heard of. Try not to worry too much. Decide as best you can. See what happens and listen to your inner voice, deep inside. You will find your way through the PRP drug and moisturizer jungle. Take your time!
  • ✽Make sure that in every handbag, rucksack, schoolbag, car is some moisturizer. Your child will need it.
  • Itchiness can be a huge problem in the beginning and can wear the whole family out. Talk to your dermatology team — they can help with some medication. Our Molly always has three different blankets on her bed. She says to cover herself with a cool (another unused “cool” blanket) helps her with the itchiness as well as a cool and wet towel or mommy’s or daddy’s cool hands.
  • Overheating can be quite a common problem, but I can tell you from my experience, you will realise when your child is too hot because his or her behaviour will start to change. And soon the child itself starts to realise when it is time to go into the shadows, drink some water or cool down the arms and legs with water. Our little ones are super PRP savvy.
  • Staring and bullying: Not a nice topic but there are ways to deal with it. In Molly’s case I informed the teachers and the parents of classmates at the beginning of every school year about PRP. That helps a lot. Everybody is informed and doesn’t has to speculate or ask anymore. Molly feels so comfy in her “skin” and has such a natural behaviour with her PRP that her skin disease isn’t a topic at all at school.

There was once a child who had called her “red tomato” – after that she stood up in class pointed at that child and told everybody that she doesn’t liked to be called “red tomato”. The other child was ashamed and she was never called a “red tomato” again. I think the best we can do is to work on the self-confidence of our PRP children so that they are prepared for life with all its easy and not so easy moments. Based on their mental strength they will be able to handle many difficult situations with the help of their inner confidence.

✽ As mentioned above, PRP leads you into another way of living and seeing the world. While going through PRP with your child you will see what really matters and you will be relaxed when the people around you are stressed about things that don’t matter and other nonsense!

✽ When you and your family are in the first horrible months of PRP, try to have some breaks. This means: Don’t worry 24 hours about your child. Not easy, I know. But constant worrying is very unhealthy, that I know too. Try to distract your child, yourself and your family with something you all like to do or something each one of you like to do. Feel the flow of life again. PRP is quite famous for eating up our thought and energy.

✽ My daughter once said to me: “I don’t want that PRP goes away – PRP is a part of me”. It was the moment I realised that I have to be careful what I was saying about PRP. After that I always have told her that it is important for me that she and her skin feels fine. IT DOESN’T MATTER IF HER PRP IS VISIBLE OR NOT. I don’t want that she has the impression that she is only “ok” when PRP isn’t visible. PRP IS A PART OF HER AND IT IS TOTALLY OK TO HAVE PRP AS LONG AS SHE FEELS FINE. IN CASE SHE DOESN’T FEEL FINE WE WILL HELP HER SKIN TO FEEL COMFY AGAIN.

✽ Sometimes it is difficult to see the child behind all the flaky skin. As parents we have to observe the skin closely to make sure that the right treatment is chosen for our kid. But there in front of you is still your child with all its needs. And the most important of them are the need of just been seen and treated as normal child!

✽ Being parent of a wee PRPer is a 24-hour, 7-days-a-week job. Day and night. Especially in the beginning when the itchiness is a big problem. It is nightmarish to see your own child suffering so much. What helped me was and is the contact to other PRP parents from the PRP Facebook and RareConnect communities mentioned above. Many friendships developed from the contacts – friendships in which you can vent, cry, feeling miserable but also feeling supported and cared. And even the wee PRPers are friends now, talking to each other, sending letters or even videos with personal messages. What a great supportive thing!

✽ But the biggest and greatest support is your little PRPer. Your child will show you what she or he needs and how much fun life can be even with PRP. She or he will teach you that there is more than worrying about PRP. There is fun, happiness and adventure in life, just waiting out there for your little hero or heroine as well as for you and the rest of your family.

A long list I know! Once again, don’t worry too much, read through it, take from the list what you think is useful and go and meet all these great people who are traveling the same PRP journey as your family are doing at the moment! I can promise you there will be a big warm welcome waiting for you and they will help you to carry all your fears!