Living with Aquagenic Urticaria: My Journey Through Water Allergy & Anaphylaxis
I want to introduce my self yo the forum, you can refer to me as Lucifer-Lynn, I am a 30 yr old Canadian Mother of three sons. I am a introverted loner with only one friend who has also been my partner over the last 5 years. I have a bearded dragon pet.
Living with Aquagenic Urticaria: My Journey Through Water Allergy
For as long as I can remember, water has been an integral part of life, a source of nourishment, and makes up about 60-70% of your body. Yet, for me, water has always been synonymous with discomfort and distress. I first expirenced having first hand Aquagenic Urticaria when I was approximately1w years old, for those unaware that is the allergy to water. It's a rare condition that causes hives when my skin comes into contact with any type of water. I have learned to navigate this unique and challenging allergy while trying to maintain a semblance of normalcy in my day-to-day life.
Understanding Aquagenic Urticaria
When I first encountered this allergy, I was thought it had to be caused by something else, I never imagined this was even a real allergy up till then. The moment water touched my skin—whether from a shower or being in the rain (sometimes)—I would break out in hundreds of hives! Concentrated on my face, scalp, neck, chest, and back but no where else on my body, wtf? It was and is both alarming and isolating, particularly as a teenager. I could and do still drink water normally and without any reaction to my skin or organs.
In addition to Aquagenic Urticaria, I also dance with Cholinergic Urticaria, which means I develop hives anywhere on my skin when I sweat, yay me! Not. Consequently, I have become quit good at at staying cool and avoiding most activities that might induce sweating, especially during the worse of its years. Life has become an intricate dance around both my allergies, one that demands vigilance and adaptability.
A Surge in Allergies
At 17, I experienced my first episode of anaphylaxis while visiting Birdshill Park. The cause was unknown, but that incident marked the beginning of a long list of allergies minor and many anaphlactic ones. Over the years, I developed severe allergic reactions known as anaphylaxis to common fruits like apples, oranges, bananas, avocados, and kiwis. Plus, I became anaphylactic to various nuts, joining the ranks I also live with over 23 seasonal allergies. Fuck me, lol.
Surprisingly, it wasn't just food and water that affected me; I also have Dermatographia, which means even writing on my skin or using pressure and pressing a line on my skin would trigger a hive-like reaction... leaving me to wonder if I was destined to live in a bubble? Am I even human? Was I supposed to exist on planet earth? Did my mom fuck an alien?
Managing My Allergies
Luckily, over the past five years, my experience with Aquagenic Urticaria and Cholinergic Urticaria has shifted slightly. I used to react severely every time water or sweat touched my skin, but now, with the help of a lot of antihistamines used in regiment, the hives have diminished. I am grateful for this progress, even though I remain cautious and aware of my environment at all times. I've grown an eversion to hating how water feels on my skin especially on my face and my hands for the last years.
I plan to discuss with my doctor the possibility of being tested for Mast Cell Activation Syndrome, hoping to gain further insights into my allergies and find a comprehensive way to manage them and figure out if there are anymore I'm unaware of at the moment.
Facts
• Approximately 32 million people in the Western Hemisphere have some form of peanut allergy.
• Around 1.6 billion people globally experience Cholinergic Urticaria, a condition also known as a sweat allergy.
• A mere 1 in 230,000,000 individuals has Aquagenic Urticaria, equating to roughly 32 people worldwide.
And here I stand as the 33rd person— and as far as I'm aware the people that developed the global average doesn't even know I exist with this experience that's both alarming and unique. I never anticipated life could be so complex for me in regards to my skin and what I can eat and not eat, but it is, and I've learned to get along with it for the time being. During my 30 years of life I've lived longer with severe strange allergies and water allegy then I've lived without them. My journey has instilled in me resilience and adaptability, essential traits for living with my extraordinary allergies.
Please feel free to share here with me somthing weird or unkown to most about your health to do with allergies or asthma.
xoxo
Just following on from my earlier reply...
In your post you said "• A mere 1 in 230,000,000 individuals has Aquagenic Urticaria, equating to roughly 32 people worldwide.
And here I stand as the 33rd person..."
Well you can add my mum, myself, and my daughter, as the 34th, 35th, and 36th people with Aquagenic Urticaria 😀
It's rare, yes, but I think there are going to be plenty of people who have never reported it, like my family. My mum went to the doctor about hers, my doctor has it on my records, but other than that, it's not really going to be included in the stats
Just tagging you, as I forgot to tag you in my earlier main reply. It's definitely nice to hear from others who also have Aquagenic Urticari as
has, and my mum, myself, and my daughter have. It's nice to know we're not alone. Whenever it comes up in conversation, "being allergic to water", people think it's weird and find it funny. It does my family no harm, other than doesn't look great for 30 mins, but it's otherwise harmless, but it's still not funny, not really. Anyway, it's great that a forum like this exists for people to tell their stories.
Thx
Hi
Many thanks for posting your story. I too have Aquagenic Urticaria, as has my mum. It's great to hear the experience of others with this condition.
As a child, I would often see my mum's Aquagenic Urticaria on her arms and back, after she got out of a bath / shower, or had been for a swim in the sea.
She always told me that for her it started at puberty, and she hoped I didn't get it. Well....when I started puberty, I too also got the urticaria.
Of course, as you well know, it doesn't matter what the temperature of the water is, or the source, a few minutes exposure, and I come up with red rashes and hives on my torso and upper arms.
I never really knew what it was as a child, and wasn't too bothered by it, as my mum also had it.
It wasn't until my mid-20's that I began to look further, and found that it was a very rare condition called Aquagenic Urticaria. The symptoms I read in the articles I found, were exactly what my mum and I had, everything was the same.
It never bothered me growing up, and I only had to explain why my torso, upper arms, and sometimes my cheeks had a red rash and weird little bumps, a few times e.g. to my wife, and children. Mostly no one ever sees it, except for when I get out of the water after swimming in a pool or the sea.
I'd say compared to some I have it fairly lightly, still enough, but not as bad as some pics I've seen online.
My doctor has it recorded on my file, but I think even they found it a little odd lol
When I was younger, my mum, assuming it was some kind of allergy, started to take anti-histamines, and found that reduced the rash/hives, or eliminated them altogether. At menopause she found her urticaria went away!!
Being male, I can only hope mine will go at some point. I'm 52 yrs old now, and have been living with it since around 12 - 13 yrs old. As I said it's never bothered me, so never made a big thing of it.
My daughter who is 18yrs old, also likely to have it. She has complained of a red rash/hives, after a shower/bath. I took a look, and yep, there it is. I've asked her to keep an eye on it after each exposure to water, but it's looking likely she also has it.
It seems to run in our family. Such a weird thing to have, but I'm glad it has no ill effect.
One thing that friends find funny, is if it comes up in conversation. Someone says "Do you have any allergies?", and I say "Yes, I'm allergic to water". Of course they ask how I drink lol, so I have to explain it's just my skin when exposed to water lol
Again thx for sharing your story!!
, thank you so much for sharing your story! Both you and have educated me about this rare condition. I know I moderate for a site dedicated to allergies, but I will fully admit that I am still often surprised by the things people have allergies to. I guess by now I should realize that human bodies are complex and we can develop allergies to pretty much anything in this world. I get that you and your family probably have no desire to be guinea pigs to the medical or scientific communities, but I do find it interesting that there seems to be a definite genetic component to Aquagenic Urticaria in your family. I am glad you didn't have to face this alone, though I also wish your family didn't have to deal with it at all.
Thanks for joining the conversation and for educating me even more on Aquagenic Urticaria.
Best, Erin, Team Member.
I am so glad you took the time to share your story here,
! Your experience is one I have not personally come across before. I'll try to avoid writing stupid comments and questions, of which I am sure you have heard many in your lifetime! People mean well, but in their ignorance, can be pretty unempathetic.
Please know I am no expert in the field, but when reading the first part of your story, my brain thought, "Mast Cell Activation Syndrome" and then I came to the part where you shared about maybe getting tested for that. I think it's a wise idea, if it's possible. I am not sure what the diagnosis could do for you, since you are already managing your multiple allergies pretty danged well. But, sometimes having an official sounding name to tell others when they ask what you have (and you want to keep it short and sweet with your answer), a diagnosis can be helpful.
I hope you will write more in this community, as your writing style is very educational and witty (the part about your Mom and the alien made me snort, very unattractively, I might add).
Living with any allergy is no fun, let alone multiple severe allergies. And a freaking allergy to water.
Thanks for taking the time to join this community and for sharing a part of your story with us!
I look forward to reading more from you!
Best, Erin, Team Member.
P.S. The weirdest allergy I am dealing with right now is not my own, but my son's. He wants to do marching band, but they have a specific asphalt practice field he is allergic to. Well, not the field itself, but either the paint or a chemical used on the field and only when it's about 75 degrees (F) or warmer outside. He ends up looking like Jabba the Hutt's son and he is absolutely miserable. He may actually be slightly sensitive to his own sweat, too. We're working on that possible cause.
