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!

Filed Under: Uncategorized

Tags:, , ,

Global Genes Comments

  1. 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!

Speak Your Mind



Follow us on Twitter

Upcoming Events

Sep 14

Rare Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

Rare Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

Rare Patient Advocacy Summit

September 15 @ 8:00 am - 4:00 pm
Sep 15

Community Nominated Ceremony and Reception

September 15 @ 4:30 pm - 9:00 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

Rare Day of Beauty

September 16 @ 12:30 pm - 4:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm