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. Val Suera Dravecky says:

    My daughter who is now 8 suffers from CU. It is very frightening. She always has a sweater or blankets in the car with me. When we go to the grocery store she needs to put on a sweater when we are near the coolers and freezers. In school she has her sweater all the time and once it’s under 50 degrees she stays in from recess. She hasn’t been in a pool since we found out. In the winter it’s snowsuit time to go from the house to car than into school, the joys of living in Chicago. She misses out on so much, between CU, seasonal allergies,peanut allergies and asthma, and it breaks my heart for her. Luckily she is a very strong girl and deals with everything that has been thrown her way with a smile. I couldn’t be more proud of her.

  2. I live in Montreal, Quebec in Canada and I seem to have developed CU after getting stung by a wasp. Symptoms started about 10 days after the sting, I started noticing tingly and itchy fingers when I would hold my iced coffee. Long story short, when I made the link that it was the cold, I started researching on internet. I still have trouble believing what is happening to me. I went jogging wearing shorts the other night for 20 min. and came home to see hives on my thighs and it was just a bit cool, maybe 60F… I am not sure what is going to happen to me in the winter when it will be more like 5F! I am sure some people would not even believe it if you tell them you are allergic to the cold, right? It sounds crazy…. until you are suffering from it yourself! 🙁

    • Kristina Cindric says:

      Exactly.. even after 19 years that I have it, people still can’t believe my words, neither their eyes when I tell them that I have CU. I would have less questions to answer if I just told them that I drank too much and broke out in hives for that reason. Sounds crazy , but nobody is ready to hear things about they just can’t accept.

  3. I’ve only had CU for three or four years, but my reactions have increased in severity recently. My first incident was just hives on my hands from working the front door at a polling place on Election Day. But then in the past few months I’ve been unable to breathe the cold winter air while waiting for a bus, and in the past two weeks I’m finding that it feels like my throat is starting to close up whenever I have anything frozen like Italian ice or ice cream. I’ve had other allergies suddenly get worse as well, and it’s honestly really scary because I don’t have a solid idea of what’s safe for me anymore.

  4. Rebecca Nelson says:

    I’ve had CU for almost 30 years now (about 3/4 of my life). I react at 72 degress and below. I grew up in So. Cal. having to always carry a flannel shirt with me into the air conditioned buildings in the summer. Now I live in Montana and spend a good hour outside in the snow every day during the winter for my job. The first couple times reacting to cold temps were the worst because I didn’t know what was happening and therefore let myself get cold enough to develop anaphylaxis. Since then, I’ve learned my limits and what I need to do to stay warm – at least to protect my core from getting too cold. Good jackets, camis, leg warmers (try them!! They help SOOO much!), cute gloves without fingertips…. Figure out what works for you. For me, staying warm at the wrists and ankles (so the blood going back to my heart stays warm) makes a noticeable difference.

    Don’t live in fear. This condition is irritating and can be dangerous, but warming up relieves the symptoms (unlike some who react to food ingestion or bee stings – that’s internal and way more life-threatening). Always have warm clothes with you, even if it makes you feel silly to tote along a lightweight jacket during the summer. Know your limits. I didn’t let CU keep me out of water (the Pacific Ocean, lakes, rivers, pools…) – I just got out and warmed up when I started to get itchy, and I always had a friend or family member with me. The more body surface that gets hivey, the greater chance of a blood-pressure drop that could knock you out, so body awareness is really the key.

    I discovered (as someone mentioned above) that Allegra helps keep the hives away when I take it daily for at least a week. This summer I was able to white-water raft in cold snow-runoff water without getting hives because I’d been taking it. I even had me feet in the water the whole time. Once I stop taking Allegra, I get hives again.

    Hope you find a combination that works for you and that you’ll grow out of it, as some very lucky people do.

    • Eve Graves says:

      Hey thanks for sharing..Warmskin will also help out, it’s kinda like vaseline or dermatone but works better and is like a lotion, NFL players use it and those with CU have also had great success…it’s much easier too! Lungplus will also keep you outside much longer as it warms your entire body!

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