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. Wow, I sure don’t have it as bad as the rest of you, and am able to manage it. If I notice it coming on from being out in the cold air or sitting on a cold chair for a while, I will throw on a warm coat or something to stop it. If I don’t do it in time, I’ll start itching like crazy, and will go to my bedroom and quickly peel off my clothes and scratch for a minute or so, which stops it. Only once have I had hives, and that was from not stopping it soon enough. Mowing my yard on a hot day, then coming into my A/C house could be murder (itching all over) till I learned to throw on a heavy, warm sweater or coat right away. I would keep it on till I cooled down. I don’t mow any more. I wear plenty of warm layers from my chin to my feet when I’m going to be out in the cold. I take a blanket with me to the movies in the summer. I turn up the heat to warm the bathroom before I take a shower. I’m 80 and have had this for several years. I went online to find out what was going on, because my doctor didn’t know. I live in Columbus.

  2. I have had it for 29 years now. Officially diagnosed when I was 18. Started showing symptoms at nearly 14 years old. I live in upstate New York. I do not take meds as they all just make me tired & cannot function with them. I have learned to adapt over the years & some “reactions” as I call them are worse than others, and that can change from season to season, year to year, not sure why though…. I know when they are coming on & know “when to say when”. I feel moving anywhere warm, or when I vacation to warmer climates just makes my body warmer, so everything is just that much more cooler than body temp & causes the reactions, so things like air condition or just room temp bottles for example are that much more of an issue for my reactions, so I just figure I’m better off in a “cooler” climate so I can “control” my body’s interaction with coolness/heat more predictably since I’ve lived here all my life.

    • Hi Wendy,
      I also feel the same way you do,about going some place warmer and then even a slightest bit cold would trigger my reactions. I kept wondering if I was better off living in the cold climate despite everything. Hopefully it’ll get better in time. Let’s hope for the best

  3. Present! It’s such a pain to have CU. I always carry a pair of gloves, scarf, sweater and My new bff antihistamines. Glad to know there’s others with this condition! I don’t have it pretty severe though. I can cold drinks but can’t hold them for more than a minute. >_<

  4. I developed CU when I was 33 and pregnant with my second child. I also developed IBS at the same time. As time goes on, I get it worse. My lips and tongue swell Along with breaking
    out in hives, skin swelling and nonstop itching.
    Last year I fell out of a kayak in the Pacific Ocean and had a terrible reaction. The group I was with was going to call 911. I’m sure I was in shock.
    I live in PA and am looking to move to a warmer state. I can’t take the cold any longer.

    • Michele Fitch says:

      Best wishes with a move to a warmer area. You should know that even though overall, things might be better for you, it is hard to escape CU, no matter the climate. Air conditioning can be as menacing as outdoor air. I find hotter areas are worse, as I transition from outdoors to indoors, I have a reaction in AC. I’ve never found any relief, but just glad I live where it is usually mostly about the same temperature. (Santa Barbara CA.)

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