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
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.
