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. Michelle Armatys says:

    My daughter also has this disease and has the most extreme case you could have…She was born with it…It can be genetic…Her father has it and was also born with it…his father has it etc…I’d never even new of such a disease until I started dating him…She has and experiences hives every single day…we live in Tn,where it’s warm a majority of the time…and she still breaks out daily…some times she has gotten so cold that she will shake uncontrollably and all I can do is force her into a hott bath,and she will stay in there for at least a couple of hours until she feels fine and the shaking has stopped…she has even passed out on a couple occasions because she was so drained physically from being cold and shaking to getting warmed up….The first time she ever broke out in huge red hives,she was 2 months old,we were hoping it wouldn’t be passed onto her,but it was,she’s 13 know..She had an actual saliva genetic test done by a doctor in California who studies this disease and she obviously tested positive…She now has a 50% chance of passing it onto any of her children…And nothing has ever worked or helped medicine wise…absolutely nothing…we’ve just learned how to live with it and work with it as best as we can…but she understands what she has and takes care of herself,but we still let her participate in activities like swimming etc….I’m sorry to hear you also suffer from this…Michelle

  2. Karmella G says:

    Another natural medication to take is apple cider vinegar (with the mother) add two teaspoons to your 8 oz of water once or twice daily this also helps build your immune system and helps fights all kinds of diseases and infections. I have been taking this and my cold urticaria is now very mild I no longer take allergy medications I rather go natural then to take the chances with other problems regarding long time use of. Prescription drugs. Hope this helps your guys too who are desperately seeking help…

  3. Karmella G says:

    Hello everyone, I too have cold urticaria I was diagnosed December 2016 how this came about is because for one I have always noticed I have been a little sensitive to the cold my skin would become really itchy and when warming up my skin would feel like it was on fire however paid it no mind time went on and with time I couldn’t stand it no more. I thought for a minute could I be actually allergic to the cold and then starting researching it did the ice test at home and it came out positive so then I set up an appointment with my allergy doctor and there it was confirmed I had cold urticaria! I took allergy medication for a good min but then that didn’t help so then started to research how I can Live a normal healthy life. I love winter and love all activities to do with being out doors I hated no being able to go places because of my cold allergy so if u also want a normal life without limitations please takes these under consideration. When going outside put on some warming lotion all over my skin including my face it’s called (warm skin) it shields your skin from harsh cold weather. Then I bought a heating jacket the arms, back, front of chest, hat and gloves are heat control so worth the money the name of jacket is called Ravean. The jack helps me so much it’s a light weight jacket that I can use anywhere and the battery life is great. My 3th precaution I use when I go out to the snow or I know it will be really cold I use this device that skies use so that they can breath in warm air va cold air it helps them to be able to perform better in their sports but me having cold urticaria it helps my lungs and throat to stay functioning perfect this device is called (LungPlus) this works wonders. I hope my information I provided for you guys helps you out because I know when I looked for help none was out there. So there is hope for us people who have this condition you just need to be willing to obtain these items. Good luck and God Bless

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 - 4:30 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 5:00 pm - 9:30 pm
Sep 16

Corporate Alliance

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

RARE Day of Beauty

September 16 @ 12:00 pm - 5:00 pm
Sep 16

Tribute to Champions of Hope

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