“Living with Aquagenic Urticaria: The Struggle of Being Allergic to Water” – Video

“Living with Aquagenic Urticaria: The Struggle of Being Allergic to Water” – Video

I’m Allergic To Water – And People Ask Me If I Shower | BORN DIFFERENT

In the video “I’m Allergic To Water – And People Ask Me If I Shower | BORN DIFFERENT,” Abby shares her experience living with aquagenic urticaria, a rare condition where her skin is allergic to water. The condition causes her skin to break out in red, itchy hives, making simple tasks like showering and crying painful experiences.

Abby’s symptoms began when she was 16 years old and it took almost 10 months of doctor’s appointments, dermatologist visits, and specialist clinics to get a diagnosis. With no cure for her condition, Abby takes four antihistamines a day to manage her flare-ups, but it’s a daily struggle.

Despite her condition, Abby continues to live her life as normally as possible. She still showers regularly by keeping it to a minimum time and avoids showers during peak flare-up times. She can drink water without any issues, as her allergy is strictly external. Additionally, Abby is passionate about raising awareness for aquagenic urticaria, a little-known condition, to help others understand and empathize with those who live with it.

Throughout the video, Abby’s mother and friend also share their initial concerns and challenges in understanding and coping with Abby’s condition. With her strength and resilience, Abby is an inspiration to many others living with rare medical conditions.

Watch the video by truly

Video Transcript

I’m allergic to my own tears agenic guaria is where your skin is allergic to water my skin personally comes up in red itchy hives it’s very painful i s just you know wanted to scratch my skin off there’s nothing I can really do about it cuz there is no cure the main question

People ask me when I tell them about my condition is how do I shower and do I shower so all I just try and do is just keep my you know face clear with water as much as I can you know I just tend to wash my face and just wash my hands

Briefly it’s mainly my back that causes the reaction when I shower it comes up the most and then sometimes up my neck as well my name is Abby and I’m allergic to water acentic geara is where your skin is allergic to water once it’s been

In contact with it for at least 5 to 10 minutes my skin personally comes up in red itchy hives and uh it’s very painful the condition is quite rare I think I read there was only about 50 people in the world that actually have it and and

I think where it’s so rare that even the doctors Specialists don’t know too much on the disease it’s a bit hard to describe the feeling um of the hives on my skin but sometimes when they were at their worst I sort just you know wanted

To scratch my skin off my skin would get very hot and very red and just yeah very itchy so I take four antihistamines a day to try and help my flare ups it doesn’t stop them necessarily but it calms them down quite a bit so they’re

Not as bad when I shower when I first had my symptoms I was just a bit confused really as I didn’t really know why my skin was flaring up you know what was happening why it was doing it um and after going to the doctors they didn’t

Really know either so I was a bit stuck on why it was happening to me so if I have been crying quite hard my skin can start to come up under my eyes will get quite red my skin can start to itch the main question people ask me when I tell

Them about my condition is how do I shower and do I shower uh that’s always a big question and I just tell them I shower just like everybody else I still shower normally every week Mom do you want to come do my back but I do try to

Keep it down you know minimum time in the shower when washing so the flare ups aren’t as bad I can easily drink water I’m not allergic internally it’s only externally so I’m only allergic on my skin so I can drink water I think I first started experience symptoms in around October November 2017

So I was only about I think 16 years old when I started to happen asked my mom if she sort of knew why it was happening my mom wasn’t very sure either why my skin was flaring up I think it was a bit difficult for my mom when I was going

Through the early symptoms her daughter’s going through something she obviously doesn’t want her to be in pain we really didn’t have a clue what was happening I think it was quite hard for her to try and deal with it Amanda were you worried about it at

All yeah I was worried because I didn’t know what it what it was or how to treat it and as a parent you always worry if something’s not quite right um I didn’t want it to to scar you yeah another wor I had was if there any like long-term

Effects with taking the medication for so long taking the amount that I do is it going to make things worse is it going to make things better cuz every time you pick up your prescription even now yeah they say oh you allowed to have that that’s really high do you allowed

To have that manyi yeah you’re like were taking that many like that strong and that many like tablets a day it was frustrating when the doctors didn’t know because you think if they don’t know who how are we going to work out what this is yeah exactly I think it was quite a

Long process as well it a long process about 10 months maybe obviously quite a lot of doctor’s appointments the dermatologist appointments and then obviously going to the The Specialist Clinic as well at the end to try and get diagn we went up to St Thomases in

London yeah I went to a specialist you to carer clinic in London and we basically did a really basic test where my mom basically had to rub water on my back for about 20 minutes um and wait for the reaction to happen uh and then the doctor come in and then realized

That my skin was flaring up with the contact with water so it doesn’t matter the temperature of the water it doesn’t really matter the pressure of the water either it’s just got to be constant water on your back for it to come up and what was the process of getting a

Diagnosis just constantly pushing at the doctors to get the diagnosis wasn’t it they would try and help and give tablets and creams and things but keep going back and saying no this isn’t working she’s still getting it she’s still in pain and just yeah just keep pushing really to try and find

Out it was a little worrying when they said it was yeah no cure really they said that it might change when you were 21 and it hasn’t it I’m 21 now so no um it might change when you have a child so we’ll wait and see for that it was

Worrying at first because you think she’s got to live with this forever but actually you cope with it really well I’m really proud of her yeah so I’m going to meet Amy and we’re going to try and make a Tik Tok video to raise a bit more awareness about acen

Heretic area are you right I think it’s important to try and raise awareness of the condition because not many people know about it so it’s always good to try and get more of a wider audience of people to try and understand uh what is happening is try and find some more information

So I could just click the timer and then I would film it like this hold it down and then to it back yeah Abby told me about the condition when we was in college at first I thought maybe maybe it’s not as true and um since then

Obviously now I know I’ve seen it so I was thinking how could you be all it to water like that’s the main component of life I I just didn’t know how but then when you explained the blistery and how red it made more sense I suppose it’s

Flared up for us when we queuing up for concerts that’s been the mo main time yeah queuing up and then it started raining and we got to try and find shelter or huddle under a an umbrella I think definitely the winter months when we go to concerts obviously you have to

Try and squeeze obviously you not allow big bags into a concert you have to try and squeeze an umbrella into one of our little bags and obviously bring a jacket as well with us just in case do you want to go to the park bit of walk yeah come

On then I’m just going to check the weather though just in case I need an umbrella doesn’t look like it’s going to be too bad but you know what I’ll bring one just in case with me yep I think I’m pretty positive about it because I just think there’s no point in

Let it get me down because it’s a daily occur it’s something that I’m living with at the moment I’ve been living with for like quite a well since 2017 I’ve been living with it so I just try to just stay positive just think about the good side of things rather than the bad

Um because I don’t really want it to like get me down she deals with her condition very well I think I don’t know many people that would be able to be allergic to water and handle it as well as you do I think it would put a lot of

Stress on my life and many others I think the way you handle it happily is yeah impressive I think I’ve adapted pretty well to have a water allergy because I’ve just sort of worked it into my daily routine my daily life I’ve just tried to have a bit of a positive

Outlook on the condition and on the situation I’m proud about how far I’ve come I think I’ve dealt with the situation well and I’ve handled it well I think it was just quite a long process of a te to get the diagnosis but I think I’ve got

Through the difficult part now it’s just trying to live the rest of my life and just sort of go on with it

Author Video Description

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21-YEAR-OLD Abbie lives with aquagenic urticaria – a rare condition that means she is allergic to water. When her skin comes into contact with water for too long, it breaks out into “red, itchy hives”, which have often been so painful that Abbie has wanted to “scratch my skin off.” She first noticed symptoms when she was 16 and without knowing what she was dealing with, Abbie’s mum, Amanda, was concerned: “I was worried because I didn’t know what it was. As a parent you always worry if something’s not quite right.” After months of doctors’ appointments and testing, Abbie finally received a diagnosis and learned that there is no cure. Since then, she has been on a steep learning curve and will often receive questions about how she washes and whether she is able to drink. As the condition only affects her external skin, she limits showers to a maximum of 10 minutes, takes four antihistamines a day to calm her flare-ups and always takes an umbrella when she leaves the house. Abbie’s friend, Amy, remembers learning of her friend’s condition and thinking “how can you be allergic to water?” but has since witnessed how “she deals with her condition very well – I don’t know many people who would be able to handle it as well as you do.” Abbie’s secret? “I’ve just tried to have a positive outlook on the condition and the situation because I don’t really want it to get me down.”

Follow Abbie on Instagram: https://www.instagram.com/abbie.leaa
Follow Abbie on TikTok: https://www.tiktok.com/@abbie.leaa

Videographer: Marcus Hessenberg
Producers: Kim Nguyen, Tom Buckman, Courtney Buabeng, Georgia Embling
Editor: Dalene Low

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Video “I'm Allergic To Water – And People Ask Me If I Shower | BORN DIFFERENT” was uploaded on 01/19/2024 to Youtube Channel truly