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. Hi, im claire. I live in lancashire,england. I have had this for as long as i can remember! I went to the doctor when i was 19. He reffered me to the skin department of the local hospital who made me sit for 10 minutes with an ice pack on my arm. It was horrible. I was reffered back to my doctor who perscribed antihistamines. Im now 30.
    I often forget to take them and its a daily battle for me, even when its warm, if theres even a slight breeze thats enough. So when everybody moans about the stuffy weather and no breeze…thats perfect for me!! I find that its not well known about and when you tell somebody you have an allergic reaction to the cold, they think that you just dont like the cold.
    I didnt know that it even had a name until i recently read that a young boy had it and him and his parents moved to a warmer country.

  2. Hi,
    I was first diagnosed at age 10. I frequently got hives on my legs at recess, I wore a school uniform that was a skirt. Then I went into anaphylactic shock from my neighbors cold swimming pool. It took some time but the allergist eventually figured it out with the ice cube test. I was told I might outgrow it, but 26 years later I still have it! I take Allegra daily all year round. I still break out in hives when the weather is bad or holding something cold but it is more manageable and the hives are not as severe. After having it for so long I’ve become pretty good with knowing my limits and listening to my body.

  3. Tatiana says:

    Hi

    My name is tati and Ive had CU for about 4 years. I’m 10 years old. I have to wear gloves so I don’t touch anything cold. I live in Malaysia and it’s really hot but indoors, it’s freezing. I’m moving to England soon and I’m so worried

  4. Hey Guys,
    My name is Mona and im from NYC. Ive had CU since for the past 11 years and im only 21. It took doctors years to actually believe me and take it seriously. Ive tried EVERYTHING, once doc even put me on doxephin(the side effects allegedly help with it). I was in the hospital the other day and i had to fight with the doctor so that we wouldnt put a cold IV in me. Its really a struggle.

  5. Valérie says:

    HI!
    My name is Valerie. I lived in Québec, I am 37 years old. I began to have urticaria in the cold when I was 11 years old. I am mom of 3 nice girls. I do ski, ice canoe… all the sport I would normally don’t do with my allergy. After many year living with this condition, I realized that I can do natural desensitization; I begin with very short time, letting my skin react. 5 minutes, after, 10 minutes, and again and again. Normally, after one month of desensitization, I am ok for few month, until I get sick. When I get sick, it begin again. 3 or 4 time, I was fainting after a big reaction. My blood pressure is going down when my skin is reacting. If I can help you and provide you some advise, please let me know! I really don’t take this as a limit in my life and I think my parent help me to think in that way. Valérie

  6. Alia Rolley says:

    I developed this condition when I was about 10. I had many episodes that were brought on by cold water. Twice they were severe enough that i fainted. After my family moved to a colder climate I had to be very careful. At the time, allergy medicine worked to keep symptoms to a minimum. That enabled me to go on a few ski trips and be out in very cold weather. By the time I was about 20 the condition was no longer an issue. No idea why.

    Now, about 18 years since mine went away, my 12 year old son suddenly developed CCU. So odd to me that for both of us it sort of came from nowhere. It was the cold ocean that brought it on today. We will have to watch him closely in the future.

  7. Hello. My 2 children, ages 13 and 14 both suffer from severe cold urticaria. My son has gone into anaphylactic shock and respiratory arrest from the cold water before being diagnosed as they thought it was from algae in the water. My daughter has severe systemic anaphylactic episodes and has gotten worse in the past year. I lived in upper Michigan and moved to Kentucky but it is still a constant struggle and am currently in the process of trying to relocate to the west coast. My children have this far worse than just hives and welts and it is very life threatening. I also wish they could do some kind of study to find what causes this rare condition. I look forward to hearing of other cases on here.

  8. I have had cold urticaria since 1987. I was finally diagnosed in 1992 by my excellent Doctor who at the end of the appointment asked the, “is there anything else bothering you?” question. I had stopped even mentioning it to doctors because they just laughed off my explanation of a cold reaction. I suffered daily. I have taken Zyrtec daily since the diagnosis. If I know I will be in a cold place for an extended period of time like a movie theater, a super market, a hospital, or swimming or in the snow or cold weather of any kind I may take two or three 10 mg tablets of Zyrtec. If I am sleeping in a cold place I will take a Benadryl as well. I don’t do well on that in the day as it makes me too drowsy.
    I have passed out in a shower after swimming once and being in a boat (for fear of falling into the water) scares me. I can be in the water 30 miniutes max before the symptoms begin. If I remain there I lose strength and pass out. What a thing for a former swimmer. I also grew up in Hawaii by the way.
    I have met 4 others with this condition but theirs did not last for so many years. One woman’s condition ended after her pregnancy. I have looked into the “low histamine” diet recently thinking I could probably help myself more. I wish someone in the profession would do a study on us!

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