I'm Allergic To Water - And People Ask Me If I Shower | BORN DIFFERENT - video Dailymotion

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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

Transcript

00:00 I'm allergic to my own tears.

00:01 Academic utercaria is where your skin is allergic to water.

00:06 My skin personally comes up in red, itchy hives.

00:09 It's very painful.

00:10 I sort of just, you know, want to scratch my skin off.

00:13 There's nothing I can really do about it because there is no cure.

00:16 The main question people ask me when I tell them about my condition

00:18 is how do I shower and do I shower?

00:22 So all I just try and do is just keep my, you know, face

00:26 clear of water as much as I can.

00:28 You know, I just tend to wash my face and just wash my hands briefly.

00:32 It's mainly my back that causes the reaction.

00:34 When I shower, it comes up the most and then sometimes up my neck as well.

00:39 My name is Abby and I'm allergic to water.

00:41 Academic utercaria is where your skin is allergic to water.

00:46 Once it's been in contact with it for at least five to ten minutes,

00:49 my skin personally comes up in red, itchy hives and it's very painful.

00:54 The condition is quite rare.

00:56 I think I read there's only about 50 people in the world that actually have it.

00:59 And I think where it's so rare that even the doctors,

01:03 specialists don't know too much on the disease.

01:05 It's a bit hard to describe the feeling of the hives on my skin,

01:09 but sometimes when they were at their worst,

01:12 I sort of just, you know, wanted to scratch my skin off.

01:14 My skin would get very hot and very red and just, yeah, very itchy.

01:19 So I take four antihistamines a day to try and help my flare-ups.

01:23 It doesn't stop them necessarily, but it calms them down quite a bit.

01:27 So they're not as bad when I shower.

01:29 When I first had my symptoms, I was just a bit confused really,

01:33 as I didn't really know why my skin was flaring up.

01:38 You know, what was happening, why it was doing it.

01:40 And after going to the doctors, they didn't really know either.

01:44 So I was a bit stuck on why it was happening to me.

01:48 So if I have been crying quite hard,

01:50 my skin can start to come up under my eyes, will get quite red.

01:55 My skin can start to itch.

01:57 The main question people ask me when I tell them about my condition

02:00 is how do I shower and do I shower?

02:03 That's always a big question.

02:04 And I just tell them I shower just like everybody else.

02:07 I still shower normally every week.

02:09 Mum, do you want to come do my back?

02:11 But I do try to keep it down, you know, minimum time in the shower

02:15 when washing so the flare-ups aren't as bad.

02:17 I can easily drink water.

02:19 I'm not allergic internally, it's only externally,

02:22 so I'm only allergic on my skin, so I can drink water.

02:25 I think I first started experiencing symptoms in around October, November 2017.

02:30 So I was only about, I think, 16 years old when it started to happen.

02:35 I asked my mum if she sort of knew why it was happening.

02:38 My mum wasn't very sure either why my skin was flaring up.

02:41 I think it was a bit difficult for my mum

02:43 when I was going through the early symptoms.

02:45 Her daughter's going through something,

02:47 she obviously doesn't want her to be in pain.

02:49 We really didn't have a clue what was happening.

02:50 I think it was quite hard for her to try and deal with it.

02:53 Amanda, were you worried about it at all?

02:57 Yeah, I was worried because I didn't know what it was or how to treat it.

03:03 And as a parent, you always worry if something's not quite right.

03:07 I didn't want it to scar you.

03:10 Yeah. Another worry I had was if there were any long-term effects

03:13 with taking the medication for so long, taking the amount that I do,

03:17 is it going to make things worse, is it going to make things better?

03:21 Because every time you pick up your prescription, even now,

03:24 they say, "Oh, are you allowed to have that? That's really high dose.

03:27 Are you allowed to have that many?"

03:28 Yeah, you're like, "Are you OK with taking that many,

03:31 like, that strong of that many tablets a day?"

03:34 It was frustrating when the doctors didn't know

03:36 because you think if they don't know, how are we going to work out what this is?

03:41 Yeah, exactly. I think it was quite a long process as well.

03:43 It was a long process.

03:44 About ten months, maybe, obviously, quite a lot of doctor's appointments,

03:47 the dermatologist appointments, and then obviously going to the specialist clinic

03:51 as well at the end to try and get diagnosed.

03:52 Probably went up to St Thomas' in London, yeah.

03:56 I went to a specialist uticariac clinic in London,

03:59 and we basically did a really basic test where my mum basically had to rub water

04:03 on my back for about 20 minutes and wait for the reaction to happen,

04:08 and then the doctor come in and then realised that my skin was flaring up

04:12 with the contact with water.

04:13 So it doesn't matter the temperature of the water,

04:15 it doesn't really matter the pressure of the water either,

04:17 it's just got to be constant water on your back for it to come up.

04:21 And what was the process of getting a diagnosis?

04:24 Just constantly pushing at the doctors to get the diagnosis, wasn't it?

04:28 They would try and help and give tablets and creams and things,

04:32 but keep going back and saying, "No, this isn't working.

04:35 She's still getting it. She's still in pain."

04:37 And just, yeah, just keep pushing, really, to try and find out.

04:42 It was a little worrying when they said it was, yeah, no cure, really.

04:45 They said that it might change when you were 21, and it hasn't, has it?

04:49 I'm 21 now, so no.

04:50 It might change when you have a child, so we'll wait and see for that.

04:55 It was worrying at first because you think she's got to live with this forever,

05:00 but actually you cope with it really well.

05:02 I'm really proud of her, yeah.

05:04 So I'm going to meet Amy, and we're going to try and make a TikTok video

05:10 to raise a bit more awareness about acrogenic uticaria.

05:13 - Hi, you all right? - Hi.

05:15 I think it's important to try and raise awareness of the condition

05:18 because not many people know about it.

05:20 So it's always good to try and get more of a wider audience of people

05:23 to try and understand what is happening,

05:25 to try and find some more information.

05:27 So I could just click the timer and then I would film it like this.

05:35 - Hold it down and then film it back. - Yeah.

05:38 Abby told me about the condition when we was in college.

05:41 At first I thought, "Oh, maybe it's not as true."

05:45 Since then, obviously, now I know I've seen it, so...

05:50 I was thinking, "How can you be allergic to water?"

05:52 Like, that's the main component of life.

05:55 I just didn't know how, but then when you explained the glycerin

05:59 and how red, it made more sense.

06:03 I suppose it's flared up for us when we're queuing up for concerts.

06:06 - That's been the main time. - Yeah.

06:09 Queuing up and then it started raining

06:11 and we've got to try and find shelter or huddle under an umbrella.

06:15 I think definitely the winter months when we go to concerts.

06:17 Obviously, you have to try and squeeze...

06:19 Obviously, you're not allowed big bags into a concert,

06:21 so you have to try and squeeze an umbrella into one of our little bags

06:24 and obviously bring a jacket as well with us, just in case.

06:27 - Do you want to go to the park, a bit of a walk? - Yeah, go on, then.

06:29 I'm just going to check the weather, though, just in case I need an umbrella.

06:33 It doesn't look like it's going to be too bad, but I'll bring one just in case with me.

06:36 Yeah.

06:37 I think I'm pretty positive about it,

06:44 because I just think there's no point in letting it get me down,

06:46 because it's a daily occurrence.

06:48 It's something that I'm living with at the moment.

06:50 I've been living with it quite...

06:51 Well, since 2017, I've been living with it.

06:53 So I just try to just stay positive,

06:55 just think about the good side of things rather than the bad,

06:59 because I don't really want it to get me down.

07:02 She deals with her condition very well, I think.

07:05 I don't know many people that would be able to be allergic to water

07:08 and handle it as well as you do.

07:10 I think it would put a lot of stress on my life and many others.

07:13 I think the way you handle it happily is...

07:17 Yeah, impressive.

07:18 I think I've adapted pretty well to have a water allergy,

07:21 because I've just sort of worked it into my daily routine, my daily life.

07:25 I've just tried to have a bit of a positive outlook

07:27 on the condition and on the situation.

07:30 I'm proud about how far I've come.

07:31 I think I've dealt with the situation well and I've handled it well.

07:34 I think it was just quite a long process of it to get the diagnosis,

07:37 but I think I've got through the difficult part now.

07:39 It's just trying to live the rest of my life and just sort of go on with it.

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I'm Allergic To Water - And People Ask Me If I Shower | BORN DIFFERENT

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