Letter to a school

Dear 一,

 I hope you find this letter informational and helpful in caring for our daughter while she is at school. Isabelle has a rare skin disorder called Pityriasis(pit-uh-rie-uh-sis) Rubra Pilaris, more commonly known as PRP to the community who deals with it. It is very ugly and scary looking to others but is not contagious, there’s a lot of skin shedding/peeling that happens as well as a lot of rawness and redness that occurs. There are around 2800 cases of PRP actively reported globally, 80 of those are juvenile cases in the US, that number now has another one added. Isabelle’s chance of getting PRP was 1 in 4 million. That makes her even more special than she already is to us. PRP can have a long list of symptoms that are different for each patient. The ones I’m listing below pertain to Isabelle, I’m going to list all of them I can in order to show everyone just how systemic PRP can be, it’s not just skin deep. ● For lack of a better term, rashes. These rashes are achy, peeling, flaky, bumpy, dry, and can feel like a sunburn. Currently they are on/in her scalp, face, ears, eyes, nose, chest, upper arms, elbows, forearms, wrists, hands, pubic area, knees, ankles, feet, and all nails. ● Fissures, or deep cracks in the skin, currently on many bends in the hands and feets. These are extremely hard to heal between her constant movement, dry skin, and increased production on skin cells. ● Unable to sweat which means she cannot regulate her body temperature. With her being so young it is hard for her to tell when she is overheating or becoming too cold. This poses a huge danger of heat exhaustion, heat stroke, dehydration and hypothermia without being exposed to harsh hot or cold weather. ● Fatigue and low energy due to the immune system battling itself, lack of good sleep, and emotional distress. With these symptoms come a slew of difficulties we are currently facing on a day to day basis. ● Hair loss, nail loss, hearing difficulty, skin infections, anxiety, stress, impaired vision, decreased dexterity, decreased mobility, joint pain, lip sores, skin pain, sleep deprivation, and sunburn. With all this said, while Isabelle is at school she needs specific care and help for some of these items while she is in a flare. ● Allowed to type or dictate for assignments if hands are too fissured/dry. ● Alternatives to walking around school if feet are too fissured. (ie: bus lines, cafeteria lines, library visits, trips to the bathroom, trips to other classes) ● Limited physical education due to rash, fissures, and temperature regulation. ● No hand sanitizer while fissures are present on hands, only hand washing. ● Access to AC/heated rooms when necessary. ● Unlimited water intake and bathroom breaks. ● Designated person/s for cream/ointment application whenever needed. Having a designated person/s will make her feel more safe and confident to ask for it when she needs it. PRP is a disorder that is different for every patient, especially when it comes to treatment. There is not very much research due to the rarity of the disorder, especially in children. We could be looking at step therapy where Isabelle tries different treatments until we find one that possibly works in the order insurance will let us. It could take one specific treatment to heal her or many. What works for one patient doesn’t work for others. It could be temporary, episodic, or chronic. Natural remission time for Juvenile PRP can be between 1-3 years unless the type she has is chronic, then only time and treatment will tell. PRP is similar to Psoriasis and has similar treatments. Isabelle is currently on topical medication paired with phototherapy as a first line of treatment. Our options after that include a class of medications called biologics, in short, these drugs are made to restart the immune system so it stops attacking itself. If we go down that road we will need a home bound option for Isabelle as we do not want to pull her out if there’s any chance of her still being able to be social through this difficult disorder. She is a shy but social butterfly and in the last two years we have come to find out that she needs other children to interact with, that’s part of what makes her Isabelle. The last thing we want to do is upset her routine more than this already has. If anyone has any questions or concerns please feel free to reach out to me or Jimmy. We are more than happy to talk about anything to do with PRP or Isabelle and any ways to make this an easier and happier time for her. We appreciate everything the staff at 一 has done to help so far, we know it can be a struggle and stressful disorder to deal with on a daily basis. Thank you again, Jimmy and Nicole 一 PS: This website has a wealth of knowledge put together by patients of PRP and can be helpful in understanding PRP more- https://prpsurvivalguide.org/