Allergic To Cold!? What Is Cold Urticaria, And Who The Hell Are You? [CC]
23
December

By Adem Lewis / in , , , , , , , , , , , , , , , , , , /


Hi! My name’s Max. I’m allergic to cold! [Upbeat digital music] So yeah. I have a condition called Cold Urticaria And it basically means that I am allergic
to the cold. So… When I go outside and it’s cold, any
part of my skin that is uncovered or gets exposed to the cold… It will come up in
a very very cute, red, bumpy, itchy rash. And it includes stuff like when I breathe
in, all the cold air that goes into my lungs my lungs become very angry. And I get lots
of wheezing, I get lots of swelling in the airways, and it’s just not very nice. “just put a jumper on”. It doesn’t really
work that way. It’s not so much about being cold, or feeling a bit chilly, it’s actual
exposure to the cold. Like, just touching something cold, wherever that touches, that’s
gonna itch. So I do cover up most of my skin, m- like, everytime I go outside anyway. Sometimes
in the house. This is quite warm, a nice knitted cardigan. Um. And there’s not really that
much of me that’s like, exposed. And I’ve got the heating on. And I’m wearing a hat. Nobody really knows quite what causes it.
I developed mine completely out the blue when I was about 14 years old. I was just- I was
just chilling. I was sat on the grass doing kid stuff. And then I stood up and my legs
were just covered in this horrible rash. It was very itchy and uncomfortable, and confusing.
We didn’t know why. So we just kind of assumed that it was just allergic to grass. Extreme
hayfever… Maybe there was some pesticides on the grass… Something… Maybe even bug
bites. But as time went on I just became allergic at weird times. So, because we thought it was a grass allergy,
I avoided grass, I then just had a random allergic reaction in my bedroom one day. My
hands swelled up unloading the dishwasher. I would lean on a table, and then suddenly
I would get a rash on the um part of my arm that had touched it. And it was just getting
weird. And then one day I just- I just realised that I was cold where I was itchy. And I was
like “well it only seems to happen when I’m cold, is that a thing?” and I think my dad
at first thought I was completely crazy. And then, we Googled it. We went to Dr Google,
everyone’s favourite for medical knowledge and diagnosis. But we just Googled, like,
“Can- Can you be allergic to cold? Can cold make an allergy worse?” And then Cold Urticaria
came up. And the rest is history I guess. I took it to a doctor like “You are gonna
think that I am nuts, BUT, I think I’m allergic to cold, and we Googled it, and it is a thing”
and he was just like “Oh yeah, cool, it’s a thing” and then it was like “take some antihistamines,
her you go, see ya!” every since then, I’ve taken antihistamines every day, and I’m still
allergic most of the time. So yeah, recently I was in the news for it.
and a lot of people also with cold urticaria were like “you should vlog! Tell me about
your life!” so… Here is my life. So we’ll start with the cold stuff. We’ll
keep going with the cold stuff for now. So I wear vogmasks when I go outside because
I get really wheezy, and sometimes it’s just not worth being wheezy, like if I’m going
out to buy more antihistamines, it’s just kinda being NERFed, so I wear these and it
doesn’t have it doesn’t have like a vent on it, so, all the air gets trapped inside the
mask and my face, and it warms up so I don’t have to breathe cold air straight out the
sky. Which is… Lovely… I do miss, like, crisp fresh air on like a winter morning.
But, y’know, you gotta do what you gotta do for your health. I walk around looking like this a lot of the
time. Not awkward at all, not at all. So yeah, this little ribbon. Don’t know if
you can see that. It’s the unofficial cold urticaria badge because there’s a chronic
urticaria one, and it’s white and there’s purple dots on it, and it’s supposed to represent
the rash. But then this one has cute little snowflakes on it. I think it represents being
allergic to cold a lot better than the white and purple one. That, and keep your friends
close and your enemies closer. So, that’s why I have a snowflake pin on the other side. It’s not just a winter problem. Everyone I
speak to is like “Oh just move somewhere warmer!”. like, yeah but that’s- that’s fine in theory,
but… When you- When you’re allergic to cold, how do you cool down? Because the sweat drying
on my skin, that can bring me out in allergic reaction. Sometimes when I cry, my tears will
cool down on my face, and then I get even puffier and itchier than just normal crying.
I can’t drink iced drinks, I can’t eat ice cream, I can’t put ice packs on my skin, I
can’t have a cold shower. How am I gonna cool down? On top of being allergic to cold, I also have
a condition called fibromyalgia, which if you know, YOU KNOW. It’s basically chronic
pain, and nobody really knows what causes it either. Which is a lot of fun. There are
SO many symptoms, I will go over it in another day, but it’s basically pain, fatigue, difficulty
controlling body temperature. I already have a problem with that, and now I have fibromyalgia.
Not helping. So, my life is a little bit interesting, medically. So yeah. And I guess a little bit more about
me and why I’m doing this. Big tea drinker *slurps* ow. With my chronic pain issues,
I also use a wheelchair sometimes because, well for many reasons, also probably down
the line, but I don’t use it all the time. Sometimes I have a good day and I can walk
around and do what I need to do on foot. Other days, I need to be in my wheelchair, and that’s
OK. I play wheelchair basketball, I coach wheelchair
basketball, and I did start doing introduction to refereeing, but the way that that works,
I would have to referee in the running game and then convert over to wheelchair basketball.
It’s a lot harder to do that when you can’t actually run up and down the court with the
players. So it’s just kind of… I just know how to do it for fun. Anything else about me… Short… Lots of
allergies. Lots of allergies to other stuff. So maybe I’ll make food videos. Probably not.
Every meal I eat is a depression meal. It’s quite sad. Maybe I’ll fix that. That can be
my new years resolution. Big science nerd. I have a masters degree
in pharmacology. Pharmacology research. Which is fun. My thesis was on asthma, so you can
ask me about that if you like. I think I’d like to study cold urticaria more, because
we know nothing about it, and it’s really annoying *whispers* really annoying. I just wanna like, not be allergic to my own
face. Like, I don’t know if you’ve ever had wind blow in your eye, and then it makes it
water a little bit. That also cools down on my face and makes me allergic, and I think
just being allergic to my own face is not, that is not how I thought my life would be.
Where do you see yourself in 10 years time? Probably swollen up, somewhere. I’m just kind
of rambling at this point. If you can’t tell, I’ve not really done this before. If you have any questions, or there is something
that I have missed, because… Badly scripted video… Do drop me a message, pop a comment
in, um… And I will do a Q+A eventually. Because, my whole life is a Q+A.


15 thoughts on “Allergic To Cold!? What Is Cold Urticaria, And Who The Hell Are You? [CC]

  1. I have CU since 1996, ppl don't believe that CU even Some ppl in healthcare don't know about it😔 – thank to educate ppl about CU☺️👍🏻👌🏾

  2. Great video. Over the years have developed a small tolerance for the cold, can drink a glass of pop with ice in it or get something out of the freezer. If I had been outside (midlands UK) today daytime without a coat on the CU would have triggered inside of 30 minutes. Hands on cold car would have been closer to 1 minute.

  3. Thank you for sharing your story. It sounds like an incredibly difficult disease to cope with. Do you have to take lots of different medicines to help with your extensive symptoms?

    How many people live with this condition?

    I live with Cyclic Vomiting Syndrome, which is an autoimmune disease that I developed during pregnancy and I could identify with some of your Twitter comments that people make out of ignorance.

    Vagus Nerve stimulation is something I’ve researched and may be beneficial for your condition. There’s a new area of study called bio-medical egineering, I believe it’s called, where they’re studying the vagus nerve and it’s connections to pain, inflammation and several other things. It’s supposed to help scientists and researchers learn more to help them with diseases that attack the body.

    Mitochondrion disease / mitochondrial defects are also an area of study with which I’ve found a lot of interesting information.

    Just thought it may get you closer to finding more helpful info on your disease and treating it / curing it one day. 🙌🏻✌️🤓

  4. Yes, I wish it would be studied more! I grew up with cold urticaria and now I'm starting to wonder if it's linked to autoimmune disease in more ways then we already know about.

  5. I have CU and I just wanna know will it ever go away ? I know I shouldn’t be embarrassed about having it but how do I stop being embarresed about it to?

  6. I was joking myself that I had CU because of the hives I get(I didnt think it was a problem since hives would go away nor did I think it was real)..Then I got into an anaphylaxis one day and yupp… it was actually true

    and damn… now I know why I had the second attack… I was sweaty and the wind was strong that day

    almost died twice.. first time was fun second time was just scary
    now I became a home potato barely going out welp :3

  7. I know I shouldn’t have but I searched cold urticaria on google and it kinda said I could die, now I’m scared of the cold. Help idk what’s helping to me even though the doctor told me it’s fine….I’m scaredddddd

  8. I have severe cold Urticaria and need an epi pen. No one ever believes me and it sucks so much! I wish people knew more about this

  9. At first I suspected every environmental stimuli, but made the connection. Looked it up, we joked about being allergic to the cold. But it's a thing. Now people don't believe me when I say it.

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