School Letter Part 1

NOTES

Describe Juvenile Onset PRP

✽  We want to describe Juvenile Onset PRP rather than PRP in general
✽  This should be a general overview and include Type 3, 4 and 5
✽  What are the SPECIFIC challenges facing PRP parents and PRP children?

Describe your child’s version of PRP

✽  We want to describe the child’s SPECIFIC version of PRP
✽  What is visible?
✽  What is not visible?
✽  Could this be a checklist that the parent completes

Specific questions/challenges

PRP – information writing

Molly

Information about PRP and medication:

Since summer 2013, our daughter suffers from an extremely rare skin disease called Pityriasis Rubra Pilaris. PRP is not contagious, lasts several months to several years (tenth), and counts at the moment, as hardly explored, to the (ev genetic) autoinflammatory diseases.

In this disease, too many skin cells are produced too quickly, which do not rip and stick together. This leads to so-called “plaques”, which inflamely red (in the later stage also salmon colors) and over large areas the affected parts of the body overlay and islands of healthy skin contain.

This disease is characterized by a severe attack of the face, particularly in the childhood. In Molly, other parts of the body are also affected. The affected sites change depending on the stage of the disease, the response to drugs and the health condition of Molly. The affected body parts are dry, dandruff and itch very. No perspiration is possible at the affected parts of the body (even after months of healing). The body thus lacks the possibility of regulating the body temperature itself by means of the formation of sweat.

The triggers for Molly’s PRP were probably two short-term infections and their treatment with antibiotics. A further treatment with antibiotics triggered a PRP thrust, which affected arms, chest and back within 2 weeks.

Since this disease is extremely rare worldwide (1 to 400,000) and the number of children affected is very low (the majority of adults aged over 50 are affected), the treatment is also a challenge for all parties involved.
This disease is characterized by active and passive phases. During active phases an attempt is made to suppress the disease symptoms by means of immunosuppressive agents and / or retinoids as far as possible until a passive phase follows without externally visible signs. The medication for this disease runs as a recurring “trial and error game”.
The fact is that the course of PRP is very capricious, peculiar and difficult to influence.

Medication Status June 2017: After therapy with immunosuppressive drugs and a retinoid as well as light therapy with UVB narrow-band, Molly is currently being treated with Traditional Chinese Medicine. If Molly’s PRP can not be stabilized, a biologica (modern immunosuppressive therapy) is next planned.

Molly’s knowledge about her skin disease:
Molly knows about her skin disease and can explain it in her own words. She is aware that the skin looks different in some parts of her body due to PRP than other children.
She is often referred to because of her skin and explains herself, if she likes to do so. For them, it is not a problem at the moment, when they are looked at or addressed, as long as this is done with respect and respect. But she also knows that she can also be addressed negatively, but this has not yet been the case. Their exterior has always been accepted by other children as it is.
It is a great concern of our daughter that she is able to do everything she does with other PRPs in her life – at best with detours or in a slightly modified form.
Molly is a very normal cheerful and interested girl and wants to be treated like that. She performs excellently and without shame with her skin disease and enjoys her active life very much.

Comment:
Molly Hauterkrankung has neither disturbed the nursery lessons nor impaired it. She could easily participate in all activities such as gymnastics, games on the playground, excursions, forest mornings and handicrafts. Even the swimming pool of the swimming clubs visits them without difficulty.

 

Possible questions

What do I have to consider when dealing with Molly regarding the regulation of body temperature?
At the moment, Molly is only able to sweat to a limited extent – but she will report when she is too hot. She says it or becomes conspicuous or dissatisfied / quivering.

Onellook: Molly must be able to get on or take off quickly if she is cold or hot
At very high temperatures and high heat in the body: cool slowly in the shade with the help of cool water extremities.
If possible, avoid extensive physical activity at very high temperatures.
Drink when she is thirsty – or at very high temperatures to make drinking attentive.

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What do I have to consider when dealing with Molly with regard to the regulation of itching?
Molly always has creams. The creams can also be deposited in the lectern and in the student club. It can be used as a self-contained creme, it needs help with disinfecting.

If it has been scratched longer and has dry scaling skin, please leave to soak.
Cleans the bloodily scratched areas

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How can I prevent active phases and pulses?

Wash hands before eating!
Parents ask to keep infectious children at home. Difficult, we know about this problem!

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FAtugue

Children with PRP are sometimes tiring more quickly than others because their body is fighting and producing non-stop.
In Molly, this was a problem only in the very acute initial phase. Please contact us, Molly should be increased and conspicuously tired.

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Simple explanation for fellow classmates.

In children’s questions, why the Molly is so “red”, the following explanation has proven itself in recent years:
“Molly’s skin works in some places super fast. As fast as Superman can fly, so quickly works her skin. Your skin needs 3 weeks until a cleansing is healed and new skin has formed. Molly’s skin does this in just 3 days. Impressive not? ”
Or simply:
“Molly’s skin is sometimes so.”

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