For teenager Sadie Tessmer, taking showers can feel like ‘being doused in gasoline and set on fire’.
The 14-year-old has an ultra-rare water allergy that affects just one in every 230 million people.
Sadie was diagnosed with aquagenic urticaria, a condition which causes a person’s skin to develop red itchy hives after exposure to water, four months ago. The allergy can be fatal if the reaction is bad enough.
It meant she hardly leaves the house, and had to leave school and give up on her dream career.
The pain is agonising, yet even crying can’t bring relief as they bring Sadie out in hives too.
The signs that something was wrong began when Sadie started turning bright red or passing 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 Sadie was diagnosed by her dermatologist in May 2022 with the condition which affects just 50 to 100 people worldwide.
Nursing assistant Amber is heartbroken watching her daughter deal with the condition, knowing there’s no known cure and very little research into it.
Sadie constantly carries two EpiPens around – auto-injectors used for the emergency treatment of life-threatening allergic reactions – but said it’s still ‘terrifying’.
Talking about how it feels, Sadie said it’s like ‘someone is pouring gasoline on my body and setting me on fire and it itches’.
She adds: ‘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.’
Throughout her life, Sadie had no issues with water. She loved going swimming and paddling at the beach.
Then suddenly, in late 2021, she started to notice her skin burning up all over her body after she showered.
Confused, she went to have a test which is used to diagnose the condition. It 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.
When she was told she was allergic to water, Sadie didn’t believe it.
She said: ‘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 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.’
Sadie’s mum made the decision to home-school her so she could avoid sweating, in PE lessons.
She’s also had to give up playing football and swimming, which she loved.
Thankfully, Sadie’s allergies don’t affect her internally, and she is able to drink water out of a straw – but if she attempts to drink out of a bottle or glass, her lips will quickly start burning up.
She has antihistamines and shots to help with the hives when they flare up, but she’s still unable to go out in the summer due to the hot and humid weather which makes her sweat.
As a result, Sadie said the condition has been ‘incredibly isolating’ as she barely leaves the family’s six-bedroom home.
She said: ‘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.
Sadie hopes that by speaking out, she can reach out to others and show them they’re not alone.
Sadie’s mum Amber 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.
‘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.’
Do you have a story to share?
Get in touch by emailing [email protected]
Source: Read Full Article