PKD Life - Spring 2020 - 3

THOUGHTS FROM ANDY

Let's Talk

Opening up a dialogue can help patients and their
caregivers better cope with and manage PKD.

this issue goes to press in early
A sApril,
the rapid spread of the

coronavirus continues to affect the
lives of many across the globe. Drastic
efforts requiring personal and professional sacrifices-including the
recent directive for millions of Americans to practice "social distancing"-
are being made in an effort to contain
the virus and protect those who are at
higher risk of serious illness.
While we wait for testing and a
vaccine to become widely available,
many people around the world are
quickly learning the value of something that the PKD community has
come to rely on for some time now:
receiving clear and honest communication from reputable sources
and experts to empower and protect
themselves and their families.
Clear and honest communication
is something we're committed to

available and how people are coping
with their pain (see page 18).
If you have one or more children
with PKD, you know how much the
disease can affect their school life.
Kids with PKD often need special
accommodations, such as access
to snacks and drinks at different
intervals than their peers. On page 8,
you'll learn about the specific plans
that allow children with medical
issues such as PKD to have equal
access to education.
If you have comments about these
articles or about anything else you've
read in these pages, please email us
at pkdlife@pkdcure.org. We would
love to hear from you.

Andy Betts
President and CEO, PKD Foundation

PKD

LIFE

at PKD Life magazine, and we want
to encourage more dialogue about
PKD between family members,
patients, their healthcare providers,
and anyone else you may come in
contact with.
But we know that talking about
PKD isn't always easy. Fears about
discrimination and other issues
often keep people silent about their
disease. On page 16, you'll read
about three people who explain
why they made the decision to disclose (or initially not disclose) their
PKD to others. Hearing their stories
may help you decide how public
or private you want to be about
your PKD.
At the PKD Foundation, we've met
thousands of people with PKD, and
we know that pain is a major issue
for many. In this issue, you'll learn
about pain relief options that are

PKD FOUNDATION

CHIEF EXECUTIVE OFFICER
Andy Betts
CHIEF OPERATING OFFICER
Amanda Hanova, M.S.M.
CHIEF RESEARCH OFFICER
Chris Rusconi, Ph.D.

BOARD CHAIR
Beverly Benson, Ph.D.
BOARD VICE-CHAIR
Klee Kleber, M.B.A.
TREASURER
Rob Roth, M.B.A.
SECRETARY
Paula Krumboltz Hutchinson
SCIENTIFIC ADVISORY
COMMITTEE CHAIR
Michal Mrug, M.D.

ISSUE CONTRIBUTORS
John Burge; Dave Callahan; Fouad Chebib, M.D.;
Michel Chonchol, M.D.; Mary Ellen Dipaola, R.D.;
Jacque English; Cynthia Fedderman; William Fissell,
M.D.; Glenna Frye; Rachel Full; Marie Hogan,
M.D.; Gillian Kolodny; Rachael Majorowicz, R.D.;
Christopher Nuzzo; Beth Overton; Ronald Perrone,
M.D.; Shuvo Roy, M.D.; Kathie Quinn; Patti Ruffin;
Rebecca Schaff er, R.D.; Veronica Soderstrom;
Marcellis Washington, B.S.W., M.S.E.D.
EXECUTIVE EDITOR
Lauren Winchester, M.A.O.L.; laurenw@pkdcure.org
CONTRIBUTING STAFF
Elise Hoover, M.P.H.; Nicole Harr

EDITORIAL, DESIGN &
PRODUCTION MANAGEMENT
MANAGING EDITOR
Donna Behen, donna.behen@manifest.com
ASSOCIATE CREATIVE DIRECTOR
Tami Rodgers
SENIOR ART DIRECTOR
Andrea Heser
VP, PRINT PRODUCTION
Laura Marlowe
PRODUCTION TECHNOLOGY SPECIALIST
Marilyn Bain
IMAGING SPECIALIST
Cary Bower

This material is provided for your general information only. You should not use the information in this magazine as medical advice, but should always consult your physician or local treatment center before pursuing or deciding to forgo any course of treatment. PKD
Life is published quarterly by the PKD Foundation (PKDF), 1001 E. 101st Terrace, Suite 220, Kansas City, MO 64131. 800.753.2873, toll free 800.PKD.CURE. The opinions expressed are those of the authors alone and do not represent the opinions, policies, or position of
the PKD Foundation, the Board of Trustees, the Scientific Advisory Committee, or editorial staff.
©
Acceptance of advertising for products and services in PKD Life in no way constitutes endorsements by the PKD Foundation. 2020 Polycystic Kidney Disease Foundation.

P K D C U R E .O R G

PKD_SP20_03_Letter.indd 3

3/30/20 11:10 AM

http://www.PKDCURE.ORG

PKD Life - Spring 2020

Table of Contents for the Digital Edition of PKD Life - Spring 2020