Shauna Castaner, 49, of Sacramento, California, lives with cold urticaria, a rare and severe allergy to cold temperatures that forces her to monitor her body temperature constantly and avoid chilled foods.
In 2012, when she was 37, Castaner first noticed her fingers swelling and turning red whenever she held an iced drink. The reaction also occurred when she handled food from the fridge, and her instinct to put her hands under hot water made the symptoms worse. For a while, that was all she experienced, and she did not worry, busy with her three children.
A Rare and Severe Diagnosis
Eventually, other areas of her body began to react. Once, while eating ice-cream, the inside of her cheeks swelled and her tongue felt strange, which was scary. In the spring of 2014, she visited a doctor who referred her to an allergist for a test: an ice cube inside a metal container is placed on the arm, covered, and left for 10 minutes. When removed, the doctor watches for hives and swelling as the body warms up.
The allergist confirmed she had cold urticaria, a rare condition meaning she is allergic to the cold, and that it was severe, potentially causing anaphylactic reactions. The doctor prescribed EpiPens and said antihistamines might help but do not always work. Castaner joined a Facebook support group, and reading others' stories made her nervous about what could happen to her.
Managing Daily Life
Cold urticaria affects people differently; some have a genetic version, while others, like Castaner, develop it for no apparent reason. It can be triggered by weather, indoor temperatures, and items like food and drink. Castaner cannot eat or drink anything straight from the fridge or freezer and has learned to take the chill out of things without making them hot, such as microwaving yoghurt for five seconds, sometimes twice.
She has determined her temperature threshold is about 73F (22.8C). Variables matter: if it is slightly colder but sunny, she can be outside comfortably, but she struggles if it is warmer but windy. She has four weather apps and temperature gauges in every room of her house. From mid-October to around April, leaving her house is hard; in the dead of winter, she bundles up in layers.
In summer, the air conditioning stays on, and she wears a cardigan, drinks hot coffee, and stays away from vents. Showers are a huge issue because longer showers make her hotter, causing a bigger temperature difference with the air. Quick temperature changes are a major trigger. She always carries two EpiPens, hot coffee, and a flask of whisky to warm up. She also wears a medical bracelet noting cold-induced anaphylaxis, as IV fluids would need warming before entering her body if she were unconscious.
Life Changes and Acceptance
Castaner no longer tells people about her allergy because they make stupid jokes, and she wants people to take it seriously. The condition forced her to give up her career as a photographer, and she is now a stay-at-home parent. It also restricted her ability to do fun outdoor activities with her children, which makes her sad.
She would not wish the allergy on anyone and often dreams it has disappeared, allowing her to eat ice-cream or walk along her favourite beach. Cold urticaria can improve or go away, but generally it is progressive. She does not hold out hope it will go away but appreciates time outside in a new way: feeling the sun on her face on the first warm enough day to stand outside and take a deep breath feels life-changing every single time.
