Calum Courtney is your typical 14-year-old boy who loves playing soccer. There’s just one catch: Calum suffers from cold urticaria, a condition that manifests as a severe allergy to cold temperatures.
His condition is so severe that if the temperature outside is lower than 75° F, he can’t leave the house for more than 15 minutes without his skin breaking into a red and itchy rash. And as that rash can progress into full-blown anaphylaxis, his parents fear the 45-minute walk could take his life as he does not have access to an epinephrine auto-injector.
The symptoms Calum endures start as red dots resembling chickenpox. The dots eventually swell and join, itch, and he gets a “pinchy feeling”. If he’s in water that’s too cold, he turns bright red and feels like he will pass out.
Says his mom, Tupney:
I think that’s the early stages of anaphylactic shock. You have to really warm him up and try and get him warm from the inside with hot drinks.
You have to think of everything. If he hurts himself, he can’t have a cold compress. He banged his hand at school and they said he needed to go to hospital because his hand had doubled in size but when I got there, he had a cold compress on it so as soon as I warmed it up, it went down.
You don’t know what reaction he could have, he could have anaphylactic shock, it’s not beyond the realms of possibility even though he hasn’t, it could happen at any point.
Calum was forced to give up playing soccer as a young boy because the risk was just too great.
Said his mom:
As a teenager, it affects everything, he can’t play out or play sports. He had to stop playing football because his whole face swells up.
He can’t be outside for long if it’s cold. He goes out and has to keep coming back in. He always gets really hot because we have to wrap his skin up. He used to really get upset because he really wanted to play football.
As a young boy, playing football puts you in the group of kids that everyone wants to talk to. He breaks out on whatever part of the body is cold.
Calum was first diagnosed at the age of four when he broke out in hives at a family wedding. His family thought he had perhaps reacted to pollen, but with the arrival of winter, he became “smothered in lumps” while playing soccer.
He was subsequently diagnosed and his parents were told to keep him out of the cold. They are speaking in the hopes of finding an allergist that specializes in cold urticaria and drawing attention to the condition. His mother says half the battle is trying to convince others the condition is real.
Says his mom:
It’s really difficult. We need help. It’s ten years of struggling, I wish we could get him a proper antihistamine that meant he could play out without looking like he’s got a disease.
Doctors suggest a lifestyle change to avoid the cold, ok we won’t live, we’ll stay indoors, not doing anything or going anywhere. You can’t change your life and move abroad.
The family is planning a trip to Turkey in August when the weather is hot. The hotel has an indoor heated swimming pool, so the hope is that Calum will have the opportunity to swim while on vacation.
Says his mom:
It affects everything, we could never go to a cold country, we can’t go to most hotels because they have cold swimming pools. It stops us being able to holiday abroad because they don’t have heated swimming pools. We picked the hottest country we could find.
It affects so much, when kids want to go ice skating, when kids want to go swimming, anywhere, to the beach, he can’t go because it’s too risky. We went to swim with dolphins in Florida and he couldn’t stay in the water.
I have to research the hotels and it costs a lot more money if there’s an indoor swimming pool because he can’t go in cold water and in another country it’s even more scary and you haven’t got an EpiPen. It’s terrifying.
We’re going to be burning hot but otherwise we’ll never be able to go and try things out.
Our hearts go out to Calum and his family and we hope they are able to find a specialist with experience in cold urticaria near their hometown in Basildon, England.
That said, we are at a loss as to why Calum has not been prescribed epinephrine auto-injectors to keep with him at all times. Epinephrine is the only treatment that can halt the progression of anaphylaxis, and as we reported in another article regarding the condition, some 20% of sufferers endure reactions that can progress to anaphylaxis.
We urge the Courtney family to seek out a physician that will prescribe epinephrine for Calum, allowing him to carry it everywhere he goes in case the unthinkable happens.