Remember, you are not alone. Below you can watch people just like you share their personal experiences with this condition.
Chronic idiopathic urticaria, or CIU for short, can look and feel different for everyone. Watch others talk about their CIU symptoms.
Vicki: Hey everybody, if you have found us on the world wide web. We are doing a CIU Google Hangout today. I’m Vicki Lawrence.
Anyway, what you might not know about me is that I have CIU, chronic idiopathic urticaria. A chronic form of hives that has lasted at least six weeks. For a lot of people that I’ve spoken to it’s lasted years. It’s idiopathic, which means the doctor cannot tell you why, so, sometimes it’s a little difficult to diagnose. I’m gonna chat with some other gals that I found that also have CIU. It affects a million and a half of us Americans. It affects mostly women but it also affects guys so you guys if you’re out there we would love to get you involved in a chat if and when we do this again.
Liz, how did it start for you?
Liz: I was actually working out at lunchtime and I came back to my desk and I was like “my hands are really itchy” and I kept itching them and it was almost like I had a mosquito bite, like multiple mosquito bites on my hand
Andi: I felt like I had mosquito bites on me all the time and just needed to itch them.
Tabatha: My hives from the day they started didn’t go away for 5 years. Every day I had hives—there wasn’t a day I didn’t.
CIU can be difficult to diagnose as symptoms can come and go. Learn more about the diagnosis journey through these personal experiences.
Vicki: Tabatha, how did you initially go about trying to control the hives?
Tabatha: I did an elimination diet where I ate rice for about a week and a half and then started adding in foods slowly. I actually moved because I lived in an old historic building and I thought what if there’s something in the ceiling or somewhere that’s making me sick. I don’t feel like there is anything that I didn’t try.
Vicki: When you break out in hives, you automatically assume it’s got to be something you’ve done. The difference with CIU is that the doctor will never be able to give you an answer as to what triggers the hives for you.
Liz: I could never get a diagnosis, because I could never show up with the actual hives when I went to the doctor. And so it took a really long time for them to realize that I needed to go to an allergist. It took me like two years to get an actual diagnosis for CIU.
Andi: Once you know that you’re not alone and once you have a diagnosis, it just takes a lot of the pressure off on a day to day basis because if you’re like me, you’re kind of consumed by it.
Finding support is an important part of the CIU journey. Watch this group of people with CIU speak with each other for the first time.
Vicki: I don’t know about you girls but this is actually one of the first times I’ve gotten to listen to some people’s stories.
Tabatha: This is also my first time speaking with people who’ve got CIU. The closest I’ve come to talking to or about CIU with others is usually somebody says “well, my uncle’s wife’s sister has had hives”.
Vicki: What about you, Andi, have you had an opportunity to connect with any other CIU patients?
Andi: Like everyone else this is my first time, but let me just tell you how excited I am!
Liz: I never could find anyone that was like “oh, you know what, I’ve heard of that before, my friend has it, let me connect you” which is really what I was hoping for. I was trying to find some support system.
Tabatha: That would’ve been really helpful because you are lost and really searching for answers.
Vicki: Which is a large part of the reason that we’re doing this together. It’s just my hope that we can get the word out there and CIU will become something that people hear about and know about.
CIU & You offers resources to educate and empower the CIU community. Watch how this program has supported and inspired others, like you, throughout their journey.
Vicki: How did any of you feel when you finally came across the CIU & You website and how did you find it?
Tabatha: The nurse at my allergist office actually recommended that I take a look at it and actually it made me cry because I was a little jealous that I didn’t have that available to me when I started this process. It would’ve made a huge difference in just being able to deal with the symptoms.
Andi: I was actually really excited to see you and your story because you were the second person besides myself that I’ve ever met or seen that had it and so to hear your story I was like “oh my gosh, she gets it!”
Liz: The CIU & You website is really cool because you can see people’s experiences and you can kind of put a picture to it.
Vicki: It is my hope that by doing stuff like this and by supporting that website, we will let all these people out there that are not finding any answers, know that they are not alone and that it is a real thing.
Sharing your experience with CIU can help others better understand their own journey. Watch others share what they’ve learned along the way.
Vicki: What would be your one single tip for people out there who have hives, who are looking for answers, who haven’t found the answer and the answer might be CIU—chronic idiopathic urticaria.
Liz: I think one of the most beneficial things you can do when you’re looking for a diagnosis is to take pictures of your hives so that you have some record.
Andi: Based on my journey, I would go to an allergist. Again just be proactive and take pictures and journal it. I put everything on notes on my phone but thank goodness I found an allergist that knew exactly what it was.
Tabatha: Be your own advocate. For me, one of the things that meant was I kept little journals and I would rate my hives and keep track of what I ate or what I did on a certain day to try and give the doctor more information.
Vicki: I want to thank you girls so much. And guys, if you're watching, I hope you will get in touch, because as I said, it does affect more women than men… mostly because I think we women get to do all the fun stuff, but you guys, I know there are some of you out there that are struggling for answers as well.
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