PRP Facebook Membership Milestone

From the Editor…
A milestone is defined as “an event or achievement that marks an important stage in a process.” PRP patients and caregivers know about milestones. We already celebrate important milestones in our journey from onset through remission.

✽  Ability to sweat
✽  Return of fingernails to pre-onset glory
✽  Return of hair
✽  A good night’s sleep
✽  Finding a treatment option that is affordable
 Returning to the workplace

Now it’s time for the PRP Facebook Support Group to celebrates its own milestone. On November 3, 2017 — just three days into PRP Awareness Month — Tim W from Mackinaw, IL became the 1,100th member of the PRP Facebook community.

Think about it. Formed in April 2013 by Jonah Grant-Scarfe (Vancouver Island, British Columbia, Canada), it took the PRP Facebook Community nearly two and a half years to reach 500 (September 6, 2015). Membership milestones have continued unabated.

   600 on March 21, 2016 — 166 days
   700 in early October, 2016 — 199 days
   800 on January 2, 2017 — 88 days
   900 on April 15, 2017 — 103 days
   1,000 on July 10, 2017 — 86 days
   1,100 on November 3, 2017 — 116 days

Predictably, the PRP Facebook population ebbs and flows with flows outpacing ebbs. On average in 2017, it takes three months to add 100 members. At that rate, the 1,200 member milestone  before Rare Disease Day (February 28) and 1,500 “mega” milestone by  PRP Awareness Month (November 2018).

How to Join the 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”

Eleven Reasons to Join

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.

Another option to to join the PRP Facebook Support Group is to just CLICK HERE.


Have you completed your PRP census form?

As of November 15, 2017, the PRP Community Database had identified  1,000 PRP patients who are members of the members of the PRP Facebook Community. Unfortunately, only 252 have provided their onset date, onset age and current status (active vs.remission). Please complete the PRP Worldwide Census. LEARN MORE.

 

OTR26 — PRP Facebook Membership Milestone

48 Replies to “PRP Facebook Membership Milestone”

  1. I mastered more interesting things on this weight-loss issue. A single issue is that good nutrition is especially vital when dieting. A big reduction in fast foods, sugary meals, fried foods, sugary foods, beef, and white flour products might be necessary. Retaining wastes unwanted organisms, and poisons may prevent objectives for fat-loss. While specific drugs temporarily solve the matter, the bad side effects are not worth it, and so they never present more than a short-lived solution. This can be a known indisputable fact that 95 of diet plans fail. Thank you for sharing your ideas on this website.

  2. You’re in some serious need of relaxation. That’s where a site like http://www.camgirl.pw comes in handy. You can do a whole lot of relaxing there. You’ll find plenty of fun girls to talk to. These are the hottest and most wild girls on the internet. Chat with them and have yourself a good time.

  3. -Discover How to Reverse Infertility and Get Pregnant Almost At Any Age, Even If You’ve Tried Everything And Nothing Has Ever Worked For You Before

  4. Thanks for helping me to attain new ideas about pc’s. I also have belief that certain of the best ways to help keep your laptop computer in excellent condition is by using a hard plastic case, and also shell, that fits over the top of your computer. These types of protective gear are generally model distinct since they are manufactured to fit perfectly above the natural housing. You can buy them directly from the owner, or through third party sources if they are available for your laptop computer, however its not all laptop may have a shell on the market. Once again, thanks for your tips.

  5. Thanks for giving your ideas right here. The other issue is that every time a problem occurs with a pc motherboard, individuals should not have some risk with repairing it themselves for if it is not done properly it can lead to permanent damage to an entire laptop. It is usually safe just to approach your dealer of the laptop for the repair of the motherboard. They’ve got technicians who’ve an expertise in dealing with mobile computer motherboard problems and can make right diagnosis and perform repairs.

  6. Things i have seen in terms of computer system memory is that there are technical specs such as SDRAM, DDR and the like, that must fit the requirements of the motherboard. If the pc’s motherboard is fairly current while there are no os issues, modernizing the ram literally normally takes under an hour. It’s on the list of easiest laptop or computer upgrade types of procedures one can envision. Thanks for expressing your ideas.

  7. Thanks for the guidelines you have contributed here. Something else I would like to state is that computer memory specifications generally rise along with other developments in the technology. For instance, any time new generations of cpus are introduced to the market, there is certainly usually a similar increase in the dimensions calls for of both laptop memory plus hard drive space. This is because the software program operated by way of these processors will inevitably rise in power to make new technologies.

  8. Thanks for the ideas you have discussed here. One more thing I would like to talk about is that pc memory demands generally go up along with other advances in the know-how. For instance, whenever new generations of cpus are made in the market, there is usually an equivalent increase in the scale demands of both laptop or computer memory along with hard drive room. This is because the program operated through these processor chips will inevitably boost in power to benefit from the new technology.

  9. I have seen a lot of useful elements on your website about pcs. However, I have the opinion that notebook computers are still less than powerful sufficiently to be a option if you frequently do jobs that require plenty of power, like video editing and enhancing. But for world wide web surfing, microsoft word processing, and many other typical computer work they are all right, provided you can’t mind the small screen size. Appreciate sharing your ideas.

  10. I’ve learned some new things as a result of your web site. One other thing I want to say is that newer personal computer os’s usually allow a lot more memory to get used, but they in addition demand more ram simply to run. If one’s computer cannot handle additional memory and also the newest software package requires that ram increase, it may be the time to shop for a new Computer. Thanks

  11. Thanks for giving your ideas listed here. The other issue is that when a problem appears with a personal computer motherboard, people should not take the risk associated with repairing the item themselves because if it is not done properly it can lead to irreparable damage to the entire laptop. It will always be safe just to approach a dealer of any laptop for any repair of its motherboard. They’ve already technicians who definitely have an knowledge in dealing with mobile computer motherboard troubles and can make right prognosis and perform repairs.

  12. I’ve learned new things via your site. One other thing I’d really like to say is the fact newer laptop or computer operating systems tend to allow much more memory for use, but they furthermore demand more storage simply to function. If an individual’s computer is unable to handle a lot more memory as well as newest software requires that memory increase, it could be the time to buy a new Computer. Thanks

Leave a Reply

Your email address will not be published.