Hear from allergist, Dr. Neeta Ogden,1 on recognizing signs of CSU, the journey to diagnosis and how a specialist like an allergist can help.
DR. NEETA OGDEN: CIU stands for Chronic Idiopathic Urticaria. (CIU, chronic idiopathic urticaria is also known as CSU, chronic spontaneous urticaria.) This is a skin condition characterized by hives, that can be severely itchy, and occur spontaneously. They last for six weeks or more, which is why it’s called Chronic. Idiopathic means we don’t know the cause of the hives, and Urticaria is a medical term for hives. CIU occurs in approximately 1.5 million people, it’s twice more common in women than men, and it tends to affect people between the ages of 20 and 40 years old.
Of every ten people who have chronic hives, at least seven of them have CIU. Because symptoms come and go without a known cause, people seek out triggers. This can include elimination diets, switching detergents, and other lifestyle changes. CIU can be hard to diagnose and treat. This form of chronic hives is best treated by a specialist like an allergist. An allergist is a specialist trained to diagnose, treat, and manage allergies, asthma, and immune system deficiencies that can affect different parts of the body. It’s important that you talk to your doctor about your experience with CIU. CIUandYou.com has resources that can help guide the discussion with your allergist. In close partnership, you and your doctor can manage your disease together.
Getting the right diagnosis for your condition can take time. While every patient’s journey is different, here are some common steps you may experience according to the Asthma and Allergy Foundation of America. Your allergist may perform tests to rule out other conditions. Once your diagnosis is confirmed, you will be on your way to finding the best treatment and care plan for you.
Actress and comedienne Vicki Lawrence,2 best known for her roles on The Carol Burnett Show and Mama’s Family, shares her story to help other patients like her who live with chronic hives. Watch as she shares her experience of finding a diagnosis and managing her condition.
Vicki Lawrence: 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.” (CIU, chronic idiopathic urticaria is also known as CSU, chronic spontaneous urticaria.) 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.