VICKI LAWRENCE: Hi, I’m Vicki Lawrence. I am an actress, a singer, comedian. I have CIU. I was lucky enough to enter a contest when I was in high school, and I wrote a fan letter to Carol Burnett and told her that everybody said I looked like her, and she came to see that contest. And that launched me on a showbiz career that I never intended to have. I woke up one morning with the palms of my hands itching. My husband was already downstairs. He was watching the news.
I went down. I said, “Sweetie, my hands are itching so bad.” I said, “You need to buy a lottery ticket. We are obviously coming into a lot of money tonight.” And we laughed about it. And we didn’t talk about it anymore, but it didn’t stop. And so I went and got a big bowl, filled it with ice, plunged my hands in there until the itching stopped. Fast forward to the next morning when I wake up and it’s like Groundhog Day. My hands are itching again. I’m like, “Okay. Now this is really, really weird.” I go downstairs. Back into the ice water.
The itching stops. I don’t think too much about it until I’m out walking the dogs a couple of hours later, and everything started to itch. I think it started in the front of my abdomen, and then it spread around to the back. And then it was my hips, and my thighs, and I would have breakouts that would start as, you know, bumps here and there. I think when you break out in hives you’re pretty sure it’s something you’ve done that you’re not thinking about. It’s something you ate last night. It’s something new you’ve put into your diet.
It’s a new detergent. Is it some piece of clothing that has done this? Maybe it’s a cosmetic that you’re using. Have you changed mascara? Have you changed your foundation? I mean you start looking for something that you’ve changed in your life that you’re not thinking about. So we went to our allergist that we’ve known for years. And he said, “Hives. Almost everybody breaks out in hives at one point or another in their lives.”
It was six weeks of doing literally everything you could think of when the doctor said to me, “I think I’m going to diagnose you with CIU.” And I said, “Okay, great. What is CIU?” He said “It’s Chronic Idiopathic Urticaria.” And I honestly thought it was such a mouthful, I was pretty sure he had probably made it up. He said, “Chronic means that it has now lasted for six or more weeks. Idiopathic means that I can’t tell you why it’s happening.”
And Urticaria is just like the doctor has to have a fancy word for hives. So my doctor, I was really fortunate that he was familiar with CIU. So we were able to put a treatment plan together for me that, that worked. My husband, Al, was so patient during all of this, so understanding, and so helpful. And I probably would not have gotten through it without him because I don’t—people don’t really understand chronic hives.
I think they just think, “Oh, you’re having a little allergic, you know, episode. And get over it. And put on some cream.” For those of us going through it, it can be really frustrating. So fast forward about a year and a half later, and I have an opportunity to join forces with the Asthma and Allergy Foundation of America, Genentech, and Novartis, and I said, “Yes, I would love to be the face of hives.” And let people know that there are, there are answers out there.
I think if you’re going through this, start immediately looking for the, for the allergist that’s familiar with CIU. There is a path. You’re not alone. And there are a million and a half other people that are right in there with you.
Hear patients tell their unique stories living with CIU and reflect on their journey to diagnosis.2
JENNIFER: My name is Jennifer.
MELINDA: My name’s Melinda.
ROBERT: My name is Robert.
DONNA: I’m Donna.
ALL: And I have CIU.
DONNA: I remember very vividly the first time I broke out in hives.
JENNIFER: I had just moved into a rent house.
MELINDA: We were on our honeymoon.
DONNA: And I was out back doing some yard work that day.
ROBERT: I noticed a uh, itching sensation around my waistline.
DONNA: And when I looked down, I saw I was covered in hives.
JENNIFER: I noticed that I had a small spot under my breast that was raised and extremely itchy.
DONNA: Immediately, I thought it was something outside.
MELINDA: Just some mosquito bites.
JENNIFER: And it didn’t take very long before the hives completely covered my body from my scalp to the bottoms of my feet.
ROBERT: It was something new that I hadn't experienced before. I just figured I was having a rash, a heat rash.
JENNIFER: And it was almost hopeless at times because you didn’t know what was going on with you, what was causing this. I felt frustrated. I was doing everything that I knew I could do to try to find a solution or a trigger or an answer.
DONNA: I had gone through at least 10 doctors minimum, and everyone had a different opinion, a different diagnosis. They weren’t answering my questions. So, that's when I started doing my elimination diets, don't eat this, don't eat that. I started being concerned that maybe it was something I was exposed to in the past. Was it environment? Something I ate? I tried different clothing, I tried different detergents and nothing seemed to make a difference.
MELINDA: It’s just really puzzling, and you want to find out why.
ROBERT: It was just a part of life at that point, where I had them on a regular basis for a good two years before I found uh, the right doctor.
DONNA: I remember after I had an exam with the allergist, he came into the room and he says, "Yeah, you have CIU." And finally, I had an answer.
JENNIFER: It’s an awesome feeling to not have that as the very first thought when you wake up in the morning is, “Ugh, what am I gonna look like today, what’s going on?”
ROBERT: I’m very happy to say that I have been hive-free for four months now.
ROBERT: It truly comes down to finding the right doctor that can uh, diagnose your problem, and, and get you on that path of recovery.
DONNA: Don't give up. Be your own advocate.
JENNIFER: I look back and I think of the long journey that I had. And they always say that you can’t really truly enjoy a rainbow without going through the rain. And that is very true. With that being said, it’s really nice to be on this end of the story.