PKD Life - Fall 2020 - 8

Ages & Stages

Guidance for parents about
how to handle the topic.
By Erika Klein

a parent, you may struggle with how and
A swhen
to talk about PKD in your family.

While every child and family is different, Gillian
Mayersohn, Psy.D., a pediatric psychologist at
St. Louis Children's Hospital, says in general it's
a good idea to talk to kids about the disease.
"Sharing information with your kids helps build
trust," Dr. Mayersohn says. "Plus, kids are very
intuitive. When you avoid a subject, whether it's
your illness or your child's diagnosis, sometimes
kids incorrectly assume that whatever is going on
is too terrible to talk about."
For Anne Bartels, of Lenexa, Kansas, honesty
about PKD has been essential. Growing up, PKD was
a common topic in her family, so as soon as she had
kids of her own, it felt natural to tell her two sons
about her condition and their potential to inherit it.

"If I tried to hide it from my kids and then
they found out something, I think they'd
be even more afraid," Bartels says.
Dr. Mayersohn recommends that parents practice the conversation first. Additionally, role-playing with kids can help
them prepare for discussions with their
peers and increase their feeling of control
over the situation.
Kids with a new PKD diagnosis may
need time to adjust before they're ready to
talk about it. Once they're ready, be sure
to name the disease, describe treatments,
and explain the ways PKD will-and
won't-affect their lives.
In all these conversations, it's OK to
show emotions and to admit when you
don't know the answer. However, try to
avoid using lots of medical jargon. "Those
terms can be overwhelming, even for us
as adults," Dr. Mayersohn says.
Finally, keep in mind that support is
available. If you need help, don't hesitate
to talk to your or your child's medical
team. A psychologist or counselor can
also offer extra support for you and your
family as you navigate living with, and
talking about, PKD. The PKD Foundation
HOPE Line is another great resource;
trained staff are available by phone or
email to offer support and connect you
to resources or people who have been
through something similar.

You know your
children best, and
you can judge their
readiness to learn
about PKD. But
pediatric psychologist
Gillian Mayersohn
offers these agespecific tips:
Under Age 8:
Use simple words,
pictures, or books
to help explain
PKD. (Anne Bartels
described cysts to her
sons as "water bubbles on your kidneys.")
Reassure kids that the
disease wasn't caused
by anything a person
did or did not do.
Ages 8-13:
Give information
using straightforward
language. Encourage
questions, but do not
force them to talk.
Ages 14-18:
Explain the basics of
diagnosis and treatment. Be ready to
answer "what if" questions, help teens prepare to talk to friends
about their disease,
and offer additional
resources if they want
to learn more.

LEARN MORE

Connect with our support team by dialing 844.PKD.HOPE
or emailing pkdconnect@pkdcure.org.

SANTI NUNEZ/STOCKSY

Talking to Kids
About PKD

Different Conversations for Different Ages

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PKD Life - Fall 2020

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