You are not alone. We are in this together.
The diagnosis of pityriasis rubra pilaris is often bittersweet. On one hand, the mystery is finally over and we may have an expectation that our dermatologist will make everything the way it was. In our Mind’s Eye, the vision we see is pre-onset.
Then the reality sets in as our disease becomes better known to us. We search the Internet, solicit the aid of Dr. Yahoo and Dr. Google, and finally discover the PRP Survival Guide. But need more. We need access to people who understand the burden of PRP. Look down the road. Look for the signs to Facebook and RareConnect.
PRP Facebook Support Group
For those who are seasoned Facebookers, the PRP Facebook Support Group is relatively easy to find.
- Go to Facebook
- Click: “Search for people, places and things”
- Type: “Pityriasis Rubra Pilaris (PRP)” including the PRP within the parentheses
- Click: “Ask to join”
The PRP Facebook Administrator, Tierney Ratti from Virginia Beach, Virginia will automatically accept your request. It is truly that simple. This is a “Closed Group” where the conversation focuses on all things PRP.
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 over 1,000 members who can share what works and what doesn’t for their unique version of PRP. We learn together. We are in this together.
PRP Community on RareConnect
The PRP Alliance also supports RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Community on RareConnect is 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.