PKD Life - Fall 2022 - 15

PLAN FOR THE FUTURE. Right now, things
may be good, but this can be an expensive disease,
so it's crucial to prepare for whatever comes along
down the line.
TAKE CARE OF YOURSELF. For most of my
life, I had the " push it as far and as hard as you can "
mentality. But since my diagnosis, I've realized it's
just as important to stop and take a rest if I need it.
And I don't feel guilty about it.
TALK ABOUT THE DISEASE. There's no shame
in being vulnerable and making people understand
what is going on with you.
BUILDING BRIDGES
While doing my investigating, I found
the PKD Foundation and learned about
the new Peer Ambassadors Program.
The website described the mission as
multifold: to engage new audiences
with relevant programs and content,
increase education and awareness,
and build bridges between the PKD
Foundation and previously underserved
communities.
I loved this idea, and I'm excited to
be a part of it. Because I must be honest,
when I first started my research, I
would have thought it was only white
people who got PKD. The faces you see
in every picture are white. But anybody
can get this disease. I'm proof of that.
And I can speak to my community in a
way that resonates, because I am part of
that community.
My first big event comes up in Sepfamily
history. When I told my dad I'd
been diagnosed and asked if he knew
anyone else in the family who had it, he
responded, " Oh, yes, I have that. Your
uncle and aunt both passed away from it,
and we all got it from your grandma. "
I was shocked, but I guess I shouldn't
Last year, when the pain got worse
and traveled to my back, I saw a doctor.
During an ultrasound of my stomach,
the tech aimed the wand away from
my abdomen and saw cysts all over my
kidneys. After a few more doctor visits, I
finally got the diagnosis of PKD at age 33.
NOBODY TALKED ABOUT IT
I had no idea what PKD was. Then I saw
a geneticist, who told me to look at my
have been that stunned. I'm originally
from Africa, and in our culture, we
don't talk about illness-ever. It's seen
as a sign of weakness. So even though
my dad had a lot of pain and even went
through dialysis, he never talked about it.
And it was pretty easy for him to hide
it from me because I
was raised by my aunt
(my mother's sister), so
I wasn't around my dad
very often.
When I was first diagnosed,
I had to do a lot
of my own research on
PKD. My initial visit with
my nephrologist lasted
only about 15 minutes,
and she didn't really
give me much information. There was
no follow-up, no plan, nothing. I just got,
" Call me if something feels off. " That's it.
It was frustrating.
tember. The PKD Foundation is going to
rent a booth at the Pan African Festival
in Silver Spring, Maryland, so I can
spread the word and talk about PKD. I
know there are a lot of people out there
just like me who have to advocate for
themselves about a disease they really
know very little about, and I want to help
combat that.
" I can speak to
my community
in a way that
resonates,
because I am
part of that
community. "
HOLDING ON TO HOPE
In some ways, I'm lucky because I've
lived a healthy lifestyle, and I think that's
what's kept me healthy for so long. But
that can make it hard, too,
because from the outside, I
don't look sick, so people forget
I have the disease.
Since I got the diagnosis,
I've been seeing a therapist,
which has helped. It can be
tough to live with the knowledge
that someday things
will not be as good as they are
now. There's a constant looming
that one day, my kidneys
may fail. I don't know what my future
looks like. While there's no cure for PKD
right now, I'm hopeful that will change
in the future.
*
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15
My Advice
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PKD Life - Fall 2022

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