A teenage girl newly diagnosed with a rare water allergy affecting just one in every 230 million people has revealed taking showers can feel like “being doused in gasoline and set on fire” – and she can’t even cry at the pain because her own tears bring her out in agonising hives.
Just four months ago, Sadie Tessmer, 14, was diagnosed with aquagenic urticaria, a condition which causes a person’s skin to develop red itchy hives after exposure to water, and could be life-threatening if she suffers a bad enough reaction.
When the teen first began to turn bright red or pass out after taking a shower, Sadie’s mum Amber Sallee, 37, from Buffalo, Missouri, USA, initially thought the water was too hot and even joked she might be allergic to getting washed.
But following a visit to her dermatologist in May 2022, Sadie – who has a brother, Bradley, 17, and two sisters, Kasie, 15, and Leslie, 12 – was diagnosed with the allergy believed to affect just 50 to 100 people worldwide.
Sadie who constantly carries two EpiPens – auto injectors used for the emergency treatment of life-threatening allergic reactions – said: “At times, it feels like someone is pouring gasoline on my body and setting me on fire and it itches.
“I always get a reaction when I shower or wash my hands, or even cry or sweat.
“It will hurt so much that I will start crying and that makes it worse because I’m allergic to my own tears which stresses me out.
“I try to avoid getting water on my face or neck because I don’t want to go into anaphylactic shock. I have EpiPens but it’s terrifying.”
Until mid-2021, Sadie had no issues with water and loved going swimming and paddling at the beach – and was able to exercise normally.
Then suddenly, in late 2021, she started to notice her skin burning up all over her body after she showered and was left in a state of confusion.
And when she was finally told she was allergic to water, in May 2022, she didn’t think it was real.
The water challenge test, used to diagnose the rare condition, involves applying a cloth dampened with room temperature water to the skin for 20 minutes to see if the patient develops hives.
In Sadie’s case, her skin began to flare up after just 30 seconds.
Sadie said: “I was worried about the things I would be able to do in my life, things like my career and even school.”
She added: “But it just didn’t seem real, I didn’t think you could be allergic to water.
“If someone told me they were, I would think they were lying.
“I will take a shower to show myself it’s not real, and it just makes me more upset.
“I was quite depressed for a few months because of it, and I get really upset when people ask me if I want to go to the beach.”
Prescribed antihistamines and shots to help with the hives when they flare up, Sadie’s mum made the decision to home school her so she could avoid sweating, and being in agonising pain, in PE lessons.
Sadie said: “At school you need to do PE, and I am allergic to my sweat. I am home schooled now so I don’t have to do PE.
“I have always enjoyed playing football and loved going swimming, but I haven’t been able to do it since.”
Thankfully, Sadie’s allergies are “not internal” and she is able to drink water out of a straw as the liquid does not touch her lips.
But if she attempts to drink out of a bottle or glass, her lips will quickly start burning up.
Unable to go out in the summer due to the hot and humid weather, that makes her sweat, Sadie said the condition has been “incredibly isolating” as she barely leaves the family’s six-bedroom home.
She said: “It makes me feel super lonely because I feel like I’m the only person who has it.
“Even going for a walk makes me feel like I’m going to pass out because I become nauseous when I start sweating, so it makes me worry about what the future will hold for me.
“I keep thinking my life is over. I wanted to be in the military my whole life, and I found out I can’t do that anymore because I can’t exercise, which was devastating.”
To make matters worse, even when she is feeling down, she has to force herself not to cry because it will cause her to break out in hives.
She said: “I worry about being emotional a lot, because I’m an emotional person so I have to do everything I can to not cry.”
And Sadie hopes that by speaking out, she can reach out to others who feel as lonely as she does – so they don’t have to be alone.
She said: “I know there are other people that have this condition, so I hope they know they are not alone. And I hope we can continue to have more research into it.”
Sadie’s mum Amber, who is a nursing assistant, said she is heartbroken that there is nothing she can do as there is no known cure and very little research into the condition.
She has spent each day since the diagnosis looking online for experts and specialists in the hope that one day Sadie can lead a normal life.
Amber said: “It’s really heart-breaking as a parent knowing there is nothing you can do.
“She comes out the shower bright red and crying, and I have to try not to cry or she’ll cry even more.
“We live in a very hot and humid area, and there are heatwaves, so it gets pretty intense and I’m so worried.”
She added: “When winter comes, I love dragging my children out into the snow but we can’t even do that.
“I am just hoping more research is done, just to make sure she can live a full life, doing all the things she wants to.”