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


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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 all. Very interesting on everyone’s experiences and how you all handle CU. I had it myself since 1999 and it progressed in getting worse. Right now I take 2 different allergy pills and take Xolair shots in each arm once a month.

  2. I have had CU since I was 2 months old, I am now 48. Each year I get a new symptom, some more life threatening than the last. This year the symptom is if I get cool air in my left ear I end up with the worst pain, and migraine that lasts 6-7 hours. The scariest is that I forget who my family are, where I am etc. I have been told that it is like a mini stroke. I suffer with pain in my chest, dizzy, flu symptoms, migraines, hives, anaphylaxis, and I do not heal properly (I have had a broken foot for 2 1/2 years). None of the medications that have been given to me, have not worked. I did read an article that said there was a break through that says it is caused by a ” Genetic Mutation “. Can’t seem to get my doctor to check into it for me..

  3. Brooklynn Shepherd says:

    I am from Texas and I also have Cold Urticaria. I have been actively breaking out for almost 4 years now.

  4. I am from Texas and despite the heat and humidity, CU still takes a toll on my everyday life. It’s so awesome that you are reaching out.

  5. Sorry about the grammar in my last post, I’m typing on my iPhone and autocorrect has gotten the better of me tonight.

  6. Hi Claire,

    My name is Paul from England UK, I too have CU and have had it now for over 10 years. I mainly react to a sudden drop in temperature, the wind blowing cold air in my face is usually the most embarrassing as my eyes form hives around them. My whole body is affected by the condition. If I am outside in the freezing cold things start to get serious, I break out in hives and start becoming dizzy as my body goes into shock, I can’t even work out at gym because my sweat acts as a natural coolant and becomes cold on my skin causing a reaction.
    I have 2 tips to share with people who suffer from this weird condition (unfortunately not a cure)
    1. Is to wear tight underclothing like under armour. This creates almost a second skin
    2. If you do reaction, try and have a hot shower or bath ASAP, for me this relives the itching and healed the hives disappear more quickly.
    Finally I would like to leave my email open to anyone that wants to share there experiences and tips on how they cope with CU. I’m every considering starting a WhatsApp Group so we can all help each other as it seems there as is only a small minority of us in the world with this condition. My personal email is iceton3000@hotmail.com. If anyone wishes to send me a message please feel free.

    Paul

  7. I have had a CU for 3 years now.. It gives me big red hives mainly on my face and then on my hands. I’m on prescription medication doxepin(oral). It makes me sleep for like 12-13 hours.

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