After six weeks, my allergist said to me “I’m going to diagnose you with CIU.” And I said,
“Great. What do we get to do now? What is CIU?” And he said, “Chronic Idiopathic Urticaria.”
And I said, “For God’s sake, I’ve never heard such a mouthful.” He said, “’Chronic’ means that
it has lasted for more than six weeks; ‘idiopathic’ means I cannot tell you why it is happening,
and ‘urticaria’ is just like the fancy doctor word for ‘hives’.”
Vicki Lawrence: I will say this is hard–it can be hard to diagnose because a lot of doctors
don’t know about this–it’s relatively, unfamiliar territory for a lot of doctors. And certainly,
there was nothing on the internet. Anyway, I was fortunate my doctor knew, and we
were able to get my hives under control.
I did have an opportunity to join forces on ciuandyou.com, which was put together
by the Asthma and Allergy Foundation of America, and it’s made possible by
Genentech and Novartis. It’s a really smart website, it’s got tons of information
for people who are looking for answers–and it would encourage to track your
hives, to take pictures and keep a diary. So, if you finally get to the right doctor,
you can tell the doctor what in the world had been going on with you, and then
maybe you can get to a diagnosis sooner than later.
Gary Barg: Yeah, yeah. Does ciuandyou.com recommend any particular kind
of doctor?
Vicki Lawrence: You want an allergist. This is their area. But I’ve
talked to people who have gone through many allergists. I would
say, call the doc, say does he know about CIU? And if he doesn’t,
find the next doctor.
Gary Barg: It’s nice to be armed with this information
upfront, because even if it’s not CIU, at least they can say,
“Okay, let’s look at this as an option.” Tell me what people
would find on ciuandyou.com?
Vicki Lawrence: For so many people, it’s been a huge relief
to have a resource for something that they literally can’t
figure out. I know it’s an old cliché to say this, but you are
not alone, there are a million and a half of us going through
this, so you don’t have to make this journey alone. And now,
I’m just really proud to say, when you Google “hives,” or
“chronic hives,” or “CIU,” we pop right up. So, we’re right
there on the internet now.
Gary Barg: It’s a blessing to have somebody in the
public eye be able to be honest and say, “This is what I’m
18 TODAY’S CAREGIVER MAGAZINE • CAREGIVER.COM 18 18 TO T DA D Y’ Y S CA C RE R GI G V
/ciuandyou.com
/ciuandyou.com
/ciuandyou.com