Hear from others like you who are living with CSU.1,2
About half to 1 percent of people in the U.S. have CSU, or roughly 1.6 million people. Women are more likely than men to have chronic hives and it occurs most often between the ages of 20 and 40. But people of any age or gender can have CSU. If you’re living with CSU, know that you’re not alone.
Hear from patients like you.
Hear patients tell their unique stories and reflect on their journey to diagnosis.
JENNIFER: My name is Jennifer.
MELINDA: My name’s Melinda.
ROBERT: My name is Robert.
DONNA: I’m Donna.
ALL: And I have CIU. (CIU, chronic idiopathic urticaria is also known as CSU, chronic spontaneous urticaria.)
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.
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