Looking for Other Patients with Cold Urticaria (Cold Contact Urticaria)

My name is Claire. I live in Cincinnati, OH.

I found out i have a disease called Cold Urticaria (CU or Cold Contact Urticaria.) I found out that I had it about 4 years after my symptoms started showing up. I first noticed my hives when i went swimming in a pool for the first time in years.

I got light headed, hives all over my body, and my body burned. I can’t eat ice cream, can’t drink cold drinks, i can’t even help my mom bring the milk in from the car because it’s to cold.

I have to stay away from anything cold and living in Cincinnati makes it pretty hard. There is one foundation for this disease and it has really helped me but we need to get the word out because every medication the doctors have put me on, so far, don’t work.

I’ve had this disease for about 16 years. I hate living in fear. Knowing that i could die just from walking in a building with air conditioning scares me. I’m only 18 and I don’t want to live in fear from day in and day out. We need help.

Do you have Cold Urticaria (CU or Cold Contact Urticaria)? Make sure to leave a comment to connect!

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Global Genes Comments

  1. Hello All,
    My son is 19 years old and has Cold urticaria since he was 11. He can’t eat or drink anything cold. Even on warm days if his sweaty and enters a building with the AC on his has a reaction. He his to have an EpiPen on him when ever he leaves the house. The allergist that he sees said he never seen someone this severe. He wearing heat gear to stay warm, he also has hot packs for his feet, hands, and body. We learned that you have to make life style changes. No ice packs for injuries, and no cold iv’s. After 4 years of him having this condition I finally realized that he needed to normal kid and enjoy sports.
    He’s very athletically inclined, so he played football his 4 years of high school with the help of the allergist. He takes 180mg of Allegra and 300mg of Zantac which is a h2blocker and makes the Allegra work stronger.

  2. Hi my name is Zoey and I have Cold Indused Uticataria. I am 12 years old and I live in Southern CA. My condition was discovered when I went into the pool and I came out of the pool and I was covered in hives I felt light headed.Also I vomited. So I went to an allergist and about a year later he said that this condition is super rare and that in his 20 years of working at that place I am only the third case he’s had. But thankfully my condition has gone away a little bit. So that is my story. So please help us get the word out so if there is a cure then our next generation won’t have to suffer from this terrible condition.

  3. Hi,
    I’ve been breaking out in bad hives for around two years now. It’ll cover my entire body and all I need to do is walk inside a place with aircon or walk past a fan to break out. I was diagnosed three days ago and it’s really getting me down. My body and face will go bright red with hives and itch and burn. Plus it looks ugly. How do you all cope with it? It’s really getting me depressed. I live in Sydney and have break outs every single day.

  4. We recently received confirmation that our four year old son has cold urticaria. He also has a severe food allergy and him beginning school in the fall terrifies me. We live in SK, Canada and winters are terribly cold. It seems the more he becomes exposed to the cold, the more he reacts. This is such a terrifying allergy because it’s not black and white and we don’t know when he’ll react. Just looking for some advice from those who have had this since you were young if your allergy increased/got worse over time the more you are exposed to cold?

  5. I’m 13 and from Kansas. My hands, arms, face, and legs get covered in painful, itchy hives when I am exposed to cold temperatures, my skin turns bright red, and it’s extremely painful. I’ve dealt with it my whole life and will continue to deal with it, and I hate it. Glad to know I’m not the only one.

  6. Testimonial from Lois who has CU and lives in MA
    I’ve had the opportunity to try out WarmSkin skin protectant and the Lungplus mouthpiece from Eve. I’ve been diagnosed with cold urticaria about 3 or 4 years ago after going nuts about why I kept breaking out in hives and two years after the birth of my second child. I had my third child with the diagnosis and though she had many food allergy concerns, she does not have CU (phew!).

    The Aurora WarmSkin lotion helps nourish my extremely dry skin and acts as a barrier to help me handle the cold. I honestly expected some greasy feel since my skin tends to soak up any lotion but still remain dry with a film of greasiness over it. The WarmSkin did pretty good. I also tested it on half of my face and the other bare to see how the difference felt. The cheek with it on was pink rosy but the other side without was its blotchy usual and then itchy with hives when I got back in. This was being out for 15 minutes.

    I tried the Lungplus without the WarmSkin while out playing with my 3 kids for about an hour and a half. It was the greatest feeling just being able to be out there with my kids having fun in the snow. I don’t know how the contraption works to keep my body warm for me to not have any hives reaction throughout the time outside and even afterwards in the house. I tried it again for a second time for a longer time, a bit over 2 hours. Again, my body was fine. I still prepared my layers of clothing top and bottom. I did not exert myself physically the first time but on the second time, I went out to shovel and play. My breathing was nice and deep. I didn’t have any problem with feeling cold, breaking out in hives, or shortness of breath. I felt that I could actually stay out longer and be okay.

    Thank you, Eve for finding the WarmSkin and Lungplus. I have a way to be out with my family during Winter and participate with them in the sports that we’ve always wanted to try. I won’t have to be left behind in a warm place and wait for them to return, I can be with them and try out these winter sports myself!

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