Awareness that cold allergies exist and are debilitating and life threatening for affected individuals is very important.
My information card reads :
COLD ANAPHYLACTIC
Contact with anything colder than 65 degrees F/18.33 deg C is life threatening
Protect from wind, rain and snow
Injections and IVs should be warmed
I was diagnosed with Cold Urticaria in late 2018. I had been experiencing strange symptoms for a while and started to research what was happening to me. Living in the West of Scotland it is common for people to use the word allergy lightly to tease others e.g. “Are you allergic to work?” When I told people that I was allergic to cold I got many answers such as “so am I” and “What are you supposed to do, stay at home?” Most commonly it would be “You have to move to another country.”
My initial consultation at dermatology was for a I believed at the time unrelated skin condition. My consultant said “I see you have diagnosed yourself with cold urticaria” I confirmed this and he requested a member of staff to fetch some ice. The bag of ice was placed onto my forearm and I returned to the waiting area where I got a few puzzled looks. I was asked back to consultation where I was told I had diagnosed correctly. My consultant asked me if he could contact me at a later date as he was compiling a list of Interesting Patients. I agreed.
Over time I have had to life with and learn how to cope with this condition. I have had to buy lightweight, warm and waterproof clothing. As a non driver this has been a challenge at times as I have to carry extra clothing, shoes etc. I have to keep a strict eye on the weather forecast as wind can also be a trigger for itchy red wheals appearing This occurs on covered skin as well so clothing is not always a barrier. I have cold contact urticaria which means that even carrying some cartons of cold milk in my arms triggers my skin.
I found a support group on Facebook; people and their family members living with this condition sharing information, on coping strategies and tips. It was incredible but also very sad, especially for the children, some of whom would have throat tightening upon swallowing cold liquid.
I was asked back to dermatology in April where blood was taken from me which confirmed the diagnosis from the ice cube test. I had my antihistamine increase from two to three times per day and I was given a prescription for two epipens which I must carry at all times. Since that day I have been doing my best to raise awareness of this condition as I realised that many clinicians did not know this condition existed or understand much about it.
I first realised when I asked a group of paramedics what they would do if they saw my medical alert bracelet which states “Allergic to Cold” and has my husband’s mobile number. They did not know, saying they had not heard of it nor had training. One advised to contact their training officer which I did.
I have also been getting help from various people within Crosshouse Hospital and Ayrshire Central Hospital to raise awareness and also from my Community Link Worker at my GP practice. However it is important that as many people as possible know about this condition so I am writing this blog to raise further awareness. Cold urticaria is a rare condition, but if people know about it, it could save my life & the life of others.
Please share far & wide to help me in my quest.
For more information go to: CARE – Cold Allergy Resource Exchange
AHPs across health and social care. 