INDEX — caregivers

From the Editor
The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment.

Share what you have learned about PRP as a patient or caregiver. Share what you have been told by your dermatologist? Share articles  you feel might be worth reading or websites worth visiting. Please use “Leave a Reply” at the bottom of this webpage to answer the following question:

What are the issues impacting caregivers?

INDEX — caregivers

One Reply to “INDEX — caregivers”

  1. One of the most helpful tools as a caregiver was to learn to ASK QUESTIONS.

    After the diagnose you are in a shock phase. Asking questions helped me to handle the diagnose.

    After the “shock phase” the dealing phase started and I had to ask a thousand and one questions about how to deal with PRP on my wee daughter’s skin. Then came the treatment phase and I asked questions — and still do — how to deal with good and bad side effects of the actual treatment. Not to forget the living with PRP phase – again, more questions about how to deal with daily challenges like swimming lessons, sport lessons at school, school trips, play dates, hobbies, holidays… with PRP.

    Because I am the Caregiver I don’t know how PRP feels like so I have to ask: Molly (the best PRP savvy ever!), our derm team, other PRP patents and their caregivers but also every other person who is around my daughter – because they might help me with some useful observations I haven’t seen or made about my daughter.

    Another helpful tool is OBSERVATION! While observing the skin of my daughter (redness, flacking, itching…) and her eating, drinking and sleeping habits as well as her behaviour (calm, tired, restless, sad, happy…) I am realising important changes early enough.

    And the last-but-not-least tool is CARE, SHARE AND LEARN! Being in contact with other PRP patients and their caregivers with the help of the PRP Community on RareConnect as well as the PRP Facebook Support Group is another major help in understanding and dealing with PRP as a caregiver. Reading and communicating about shared experiences, testimonials and built up knowledge improves my PRP savviness and my mental health as a caregiver tremendously.

    As a caregiver I want to be ready and strong enough the face and deal with PRP my little daughter so she can rely on me. I want to be the support she really needs during these rough times on her bumpy PRP ride!

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