Eleven Reasons to Join the PRP Facebook and RareConnect Communities

From the Editor …
In March 2014, the members of the PRP Facebook Support Group were asked the question: Why should a PRP patient join the PRP Facebook community share? The 11 reasons listed below were the result of the 19 patients and caregivers who responded. They are just as valid for the PRP Community on RareConnect.

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 — 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 health care 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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