It is well understood that one of the many challenges facing the Polycystic Kidney Disease community is raising public awareness about our disease. It seems that almost every other disease is recognized by the general public except ours.
It is my humble opinion that in this age of Twitter, Facebook, LinkedIn amd YouTube, raising awareness about PKD shouldn’t be as much of a challenge as some make it out to be.
However, I wish to discuss another kind of awareness. This is the awareness that many PKD patients can develop for themselves.
First, there is the awareness of the state of the art of medical technology in the care and treatment of the symptoms of PKD. At-home and overnight hemodialysis protocols have developed to the point that survival rates match those with kidney transplants. Medications following transplants have evolved over the years to offer more options to deal with any post-transplant issues.
Second, there is the awareness of the Social Media communities that offer support and practical, non-medical advice, along with virtual “hand-holding” for patients going through “trying” times. In taking part in these virtual communities, a patient feels a part of a community, rather than apart from society. Imagine what life must have been for PKD patients 15 and more years ago, before the internet brought people together in this virtual way. The sense of isolation must have been very difficult to deal with, above and beyond the disease itself.
Third, PKD patients can become active in local chapters of the PKD Foundation. In these chapters, PKD patients are welcomed, accepted, and understood. A patient doesn’t have explain him/herself in order to feel “at home.” Collectively speaking, we know what you are going through.
This feeling of acceptance is no small matter for many patients. All too often patients feel that they are not totally accepted nor understood by their community at large. Sometimes, there is a feeling of being rejected even by their own families!
To know that there are real flesh and blood people that are going through and have gone through what you are going through is often an unbelievable boost your self-esteem!
For those patients who feel any sense of isolation, I highly recommend joining a local chapter of the PKD Foundation.
Check out www.pkdcure.org to look for your nearest chapter.
In other words, the awareness I’m talking about is the awareness of all the resources, medical and social, that can make your PKD Odyssey as bearable as possible.
And, if you feel you need someone to talk to one-to-one about any sense of isolation you may have, please, please contact me at
for a complimentary coaching conversation on how you can feel a full part of society.
Until next time,
Be Aware!
Peace and Blessings!
Coach Richie Perl
Great post, Richie. I can tell you personally that the PKD Foundation is in the process of bumping up its social media efforts to continue reaching out to those in the PKD Community, both in the real world and online. Keep up the great work!
Hi, Daniel!
Thank you for your comments!
It would be nice to know exactly what these social media efforts are.
INHO, HopeSquare has not achieved its intended outcome. I no longer go to that site. On Facebook, on the PKD Foundation “Cause” page, there isn’t a heck of a lot of input.
On the contrary, most of the cutting edge info about PKD and Kidney Disease in general has been “shared” by people NOT employed by the PKD Foundation! “Laypeople” have been way more proactive in sharing info than the PKD Foundation! This is my experience!
I hope this changes!
A cure is needed, of course. But what are patients supposed to do until that day comes? Again, in my opinion, The PKD Foundation has been sadly lacking.
I’m always open to talk about it!
Peace and Blessings!
Coach Richie Perl
Many many thanks for the insight, Richie! I’m rather new to the Foundation myself so any and all perspective is both welcomed and appreciated.
Initially, the most apparent of the renewed efforts is going to be on Facebook and Twitter, where as page administrator I plan on posting content daily, if not more frequently. Are you currently a “fan” of the Foundation’s Facebook page or “follower” of the Foundation on Twitter?
Secondly, we at PKDF are dedicating more resources and time to the PKD community-centered social network, Hope Square. At first, PKDF staff was discouraged from creating profiles and participating in anything other than network maintenance, but that is soon going to change. Other plans are in the works to make Hope Square a more vibrant and impactful online community.
As far as everything between now and a cure, the Foundation has aligned itself to, in addition to being a committed research-funding organization, also be an invaluable educational and communications resource to those affected by the disease, whether it be personally or through a loved one.
So in summary, plenty of exciting efforts, features, and resources are being polished and/or prepped, all of them falling in line with the Foundation’s collective purpose: to fight every day for a cure and in the meantime offer all we can to those waiting for one.
Feel welcome to contact me personally at danielm@pkdcure.org with any additional questions/comments/concerns. And as always, thanks for all the great work you do in the name of the PKD community!