INDEX — help and finding support

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:

I feel alone. Where can I find support?

INDEX — help and finding support

2 Replies to “INDEX — help and finding support”

  1. This may be a self-serving comment, but what the heck.

    There are THREE places to find support.
    ✽ The Land of Chat — PRP Facebook Support Group
    ✽ The Land of Profiles — PRP Community on RareConnect
    ✽ The Land of Advocacy — The PRP Alliance

    PRP Facebook Support Group

    For those who are seasoned Facebookers, the PRP Facebook Support Group is relatively easy to find.

    ✽ Go to Facebook. This assumes you have a Facebook account. If you don’t, find a family member who does.

    ✽ Click: “Search for people, places and things”

    ✽ Type: “Pityriasis Rubra Pilaris (PRP)” including the PRP within the parentheses

    ✽ Click: “Ask to join”

    Long-time PRP patient and PRP Facebook Administrator Tierney Ratti will automatically accept your request. It is truly that simple.
    Remember, this is a “Closed Group” where the conversation focuses on all things PRP. No politics. No selling of sun glasses (inside joke to PRP Facebookers).

    Post a question and comments flood in. Need a hug, the huggers respond. Need a friend … there’s a community of fellow travelers ready to lend an ear or a shoulder. Need information … there are nearly 1,000 members who can share what works and what doesn’t for their unique version of PRP. We learn together.

    GO TO: https://www.facebook.com/groups/15865278115?__user=100007341512802&_rdr=p&ref=bookmark

    PRP Community on RareConnect

    The PRP Alliance is working with RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Alliance is a member of NORD and supports the PRP Community on RareConnect — a multi-language, non-Facebook option for adults with PRP and the parents of children diagnosed with juvenile onset.

    RareConnect provides a “safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.”

    COMMUNITIES — RareConnect includes disease-specific online communities that enable people living with rare diseases to meet, share stories and learn from each other. Communities are created in partnership with patient groups who bring resources such as moderators, relationships with specialists and validated information.

    Translation — RareConnect helps people who live with rare diseases from around the world to connect by providing different translation services. They provide an integrated machine-translation service but also an additional human translation service to ensure quality communication between members of the network. Languages include English, German, Spanish, French, Italian and Portuguese

    Storytelling — Being able to share your story of living with a rare disease is an important step in connecting with others in a similar situation as well as allowing others to learn from our experience. RareConnect allows us to share our stories and translates it into the many languages of the platform therefore allowing people from many other cultures to benefit from it.

    Connections — Connect with other people living with rare diseases in order to share experiences, find support, ask questions and gain access to a rich network of supportive patient organisations.

    Christine Günther (Zürich, Switzerland) and Bill McCue (Plano, TX, USA) are co-moderators

    GO TO: https://www.rareconnect.org/en/community/pityriasis-rubra-pilaris

    PRP Alliance, Inc.

    PRP Alliance is a 501(c)(3), nonprofit, patient advocacy organization.

    Our mission is to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP); the implementation of more effective and accessible treatment options and an increase in PRP-specific research.

    ✽ Every PRP patient, young or old, begins their PRP journey at the same starting point: onset. We had no idea what was happening to our skin and the journey upon which we were about to embark.

    ✽ We reach the first milestone, diagnosis, only to discover a lack of PRP savviness among healthcare professionals. For too many of us, we are provided with the correct spelling of pityriasis rubra pilaris and aimed us in the direction of Dr. Google and Dr. Yahoo.

    ✽ After we digest the “official” diagnosis, our focus shifts to treatment where we learn: “What works for one doesn’t work for all.”

    ✽ And then there is the endgame. While most of us set our sights on remission, others must look to a more distant outcome: long-term management.

    And along the way, we are continually reminded that PRP is an ultra-rare disease and PRP-savvy dermatologists are just as rare.

    GO TO: http://prpalliance2.harmonic-data.com

  2. Eleven Reasons to Join a Support Group and Share

    As published in On the Road… (April 1, 2014, page 9)

    Members of the PRP Facebook Support Group were asked the question: Why should a PRP patient join a support group and share? The 11 reasons to the left were the result of the 19 patients and caregivers.

    1. To better understand pityriasis rubra pilaris through the collective, first-hand experiences of those who have been afflicted. We are in this together.

    2. To provide—and to receive—hope, encouragement, and emotional support. This is especially important in the absence of an existing support system. We are in this together.

    3. To minimize loneliness and feelings of isolation. To know that we are not alone. We are a community of kindred spirits. We are in this together.

    4. To effectively manage expectations and maximize hope. We want more than our fair share of good news and are willing to work for it. We are in this together.

    5. To lighten the burden placed on loving family members by sharing that burden with the PRP community. We are in this together.

    6. To recognize that everyone has their own version of PRP and what works for one may not work for another. We can find effective ways to cope with pain, anxiety, stress, depression and frustration. We are in this together.

    7. To promote a better understanding of our disease within the PRP community by sharing our personal experiences with treatments, dermatologists and other healthcare professionals. We are in this together.

    8. To promote participation in bona fide research projects designed to improve the diagnosis, treatment and understanding of PRP by the medical community. We must find ways to enlighten dermatologists and other healthcare professionals. We are in this together.

    9. To maintain a core value of acceptance, understanding and empathy. We are in this together.

    10. To vent to each other when our pain is too great, our frustrations unbearable and our fear overwhelming. We are in this together.

    11. To meet a fellow PRP face to face, in the flesh. Isn’t it about time we hugged? We are in this together.

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