If you are living with chronic idiopathic urticaria (CIU), a form of chronic hives, you are not alone. Approximately 1.5 million people in the U.S. are affected by this condition. On this site, you'll find resources for managing CIU and hear from others about their CIU journeys, including Emmy® award-winning actress and comedienne Vicki Lawrence.Watch Vicki’s Story ›
Watch Vicki and others share their personal experiences with this condition, from getting diagnosed to sharing the lessons they’ve learned on their journey.Watch Now ›
Join The Hive – a virtual mosaic – to show your support for those living with chronic idiopathic urticaria, a form of chronic hives.Join Now ›
CIU can look and feel different for everyone, but there are three common factors:
The “chronic” in CIU means that symptoms last six weeks or more. CIU is an unpredictable form of chronic hives that can appear at any time with no identifiable cause. These hives may not go away for many months—or even years. CIU can be difficult to diagnose.
This means there is no explanation for what’s causing the hives. This can be difficult for some people to accept when they receive the CIU diagnosis from their doctor. Because these chronic hives symptoms come and go without a known cause, many continue to look for possible triggers for their condition. This can result in a cycle of elimination diets, removal of potential irritants, such as detergents, or other lifestyle changes, in addition to allergy testing – none of which prove to be the cause of the hives.
Pronounced “ur-ti-kair-ee-uh,” this is the medical term for hives. Urticaria appear as red, itchy bumps or welts on the skin, and can appear anywhere on the body. A red hive will turn pale when pressed in the center, which is called “blanching.” For every 10 people whose hives are chronic, at least seven of them have CIU.
If you have already been diagnosed with CIU, know that you are not alone. In the U.S., around 1.5 million people are affected by this form of chronic hives. Women are twice as likely as men to experience CIU, and most cases appear between the ages of 20 and 40.
CIU & You is an educational program focused on supporting the specific needs of people suffering with chronic idiopathic urticaria. Developed in partnership with the Asthma and Allergy Foundation of America (AAFA), and made possible by Genentech, Inc. and Novartis Pharmaceuticals Corporation, CIU & You aims to educate and encourage patients to better communicate their symptoms to their healthcare provider.
If you are experiencing CIU, an allergist may ask you to describe symptoms during the course of an extended period to help confirm your diagnosis. While not life-threatening, CIU can cause severe itch and visible hives.
This program provides tools to help you share your symptoms with your doctor so you can have a productive conversation about managing your condition.
Vicki Lawrence – famous for her roles on “The Carol Burnett Show” and “Mama’s Family” and more recently on “Hannah Montana” – is turning the spotlight on CIU
Working in TV and comedy has been my dream for as long as I can remember. Oh, my gosh, you guys. I was 18 years old when Carol Burnett found me. Jog your memory. (LAUGH) I feel very lucky to be able to do what I do for a living. I woke up one morning with the palms of my hands itching. They were driving me nuts. And then, when it didn’t go away, I decided I better go in the kitchen and put those babies in some ice water.
Flash forward to the next day, when I wake up with my palms itching again. Well, now it’s not so funny. I’m like, "What is going on here?" I went out to walk the dogs. By the time I got home, the itching had spread. It was my abdomen, my back. I remember pulling up my shirt and looking in the mirror going, "Oh, my gosh. What--" you know-- you know what Mama would say, "What the heck is goin’ on here?"
They started to merge. They looked like continents. I couldn’t stop the itching. All I could think was, "Cold shower." I ran upstairs. I turned the shower on. I kept turning the nozzle down lower and lower and lower, until it was so cold that I was shivering and I couldn’t stand it anymore. I jumped outta the shower. I put a menthol lotion all over my body, sat on the edge of the bed, just shivering, hoping that maybe the hives would stop long enough that I could pass out on the cool sheets for a few minutes.
They didn’t stop. I started avoiding things that I thought maybe were causing the hives. I convinced myself that warm water was triggering the hives. I knew at that point that I really needed to get in touch with my allergist. My allergist and I tried everything that you can possibly think of and we still couldn’t find a cause for the hives.
As much as I was seeking answers, I wasn’t getting any. And I wasn’t getting any relief, either. Weeks passed, but the hives didn’t. They wouldn’t go away, no matter what we did. After more than six weeks of trial and error, my doctor finally diagnosed me with chronic idiopathic urticaria. Mouthful. CIU, as it is known, is chronic idiopathic urticaria, a form of chronic hives with no known cause that can consist of severe itching. And it may last for many months, sometimes even years.
I’m one of approximately 1.5 million people in the U.S. who have this condition. I have never been one to hide things or to be quiet about them. But having CIU wasn’t something that I was really comfortable talking about. The fact is that CIU is now a part of my journey. And with it, I’ve had experiences that I have decided to share with the hope that they will help you and help others.
You know, your friends, your family, they’ll have lots of suggestions for you. My daughter told me I needed a holistic diet. I had a friend who told me I had to stop drinking red wine. You know, they don’t understand what you’re going through. They’re trying their best, but they don’t understand. My husband was my rock. Al did everything he could to be there for me. But I know how difficult it was for him. I’m really grateful that he respected what I was going through. But I didn’t know if anyone else was really experiencing the same thing.
My involvement in CIU & You has given me the chance to meet with other people who are living with this condition. I partnered with the Asthma and Allergy Foundation of America, Novartis and Genentech and I hope that by sharing my story and their stories that those of you who are living with CIU will know that you’re not alone out there.
I hope it inspires you to not give up, to jumpstart the conversation with your doctor, to be proactive, and get the support that you need to manage your CIU. I mean, I know from my life’s work that planning and scripting will only take you so far. The fact is that life is full of improv moments and working through my CIU was one of those. Fortunately, that wasn’t the case for my allergist. He was very knowledgeable.
He was able to help me get through my diagnosis and the management of my condition. Having an informed allergist who is familiar with CIU is a really important part of your management. So, while you’re on the CIU & You website, download the Hives Conversation Starter and Symptoms Tracker. Fill it out. Use it to record your experience. And bring them with you the next time you go to see your doctor so you know exactly what you wanna talk to him about. Don’t let that next doctor visit be an improv moment.
Vicki Lawrence is no stranger to being quick on her feet and delivering improv lines on stage. But when she was diagnosed with this form of chronic hives without a known cause, she was caught off-guard.
After the first outbreak of hives which were accompanied by an intense itch, Vicki tried to figure out the cause of her hives, with little success. “I was at my wit’s end. I didn’t know what I was going to do. I stopped drinking red wine, I changed soap, and I submerged my hands in bowls of ice water. I started avoiding things that I thought were causing the hives.
“My allergist tested me for everything but we still couldn’t figure out a cause for the hives. It was so frustrating to keep searching for a cause. And as much as I was seeking answers, I wasn’t getting any, and wasn’t getting any relief either. Weeks passed, but the hives didn’t. Friends and family offered suggestions and their own explanations but they didn’t understand what I was going through.
“I want to be open about my condition to show others that they are not alone in their struggle with this form of chronic hives.”
Allergists are specialists who focus on this form of chronic hives. They are trained to diagnose, treat and manage allergies, asthma and immune system diseases that can affect different parts of the body.
It’s important that you talk with a specialist about your experience with CIU and share details about your symptoms. Think about your condition and write down what you are going through. In close partnership, you and your doctor can manage your disease together.
If you’re unsure how to start the conversation with your doctor, download and complete this Hives Conversation Starter and Symptom Tracker, so you can use it at your next appointment.Download Resource ›
Here are a few images from people with CIU:
The Asthma and Allergy Foundation of America (AAFA), a not-for-profit organization founded in 1953, is a leading patient organization for people with asthma and allergies, and the oldest asthma and allergy patient group in the world.
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