- 5 hours ago
00:00 - Introduction
01:06 - The Sisters Allergic To Sunlight
05:50 - Courtney & Epidermolysis Bullosa
09:51 - Nyla & Ichthyosis
13:59 - Daisy & Extreme Eczema
19:05 - Harrison & Scleroderma
27:12 - Claudia & Epidermolysis Bullosa
34:54 - Nathalie & Ichthyosis Confetti
39:36 - Paloma & Congenital Lamellar Ichthyosis
01:06 - The Sisters Allergic To Sunlight
05:50 - Courtney & Epidermolysis Bullosa
09:51 - Nyla & Ichthyosis
13:59 - Daisy & Extreme Eczema
19:05 - Harrison & Scleroderma
27:12 - Claudia & Epidermolysis Bullosa
34:54 - Nathalie & Ichthyosis Confetti
39:36 - Paloma & Congenital Lamellar Ichthyosis
Category
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NewsTranscript
00:00Amy and Taya have been diagnosed with xeroderma pigmentosin.
00:04They're 10,000 times more likely to get skin cancer than URI.
00:08I live with Evie. It's a genetic skin disorder.
00:11I'm missing a layer of my skin so it blisters really easily from friction.
00:17Nyla has ichthyosis.
00:19She's able to tell everybody herself now like nothing's wrong with me or it's just my skin
00:23and we make sure we give her that confidence.
00:25I have severe eczema. I'm currently going through topical steroid withdrawal.
00:29I just decided that the best route was to go natural and hope that my skin will heal itself
00:34and get back to where it was.
00:36Harrison has an autoimmune disease.
00:38It makes his skin very tight. He can't flex his feet or move his hands at all.
00:43He's the only one in Australia with the form he has and there's only 30 in the world.
00:47My rare skin condition affects over 80% of my body.
00:50Currently there's no cure and it is a progressive condition.
00:54I'm born with ichthyosis confetti. My skin is dry and grows too fast.
01:06So when Ami was really young, that's when she had her first burn at about three and a half months
01:11old.
01:11She didn't settle in the afternoon and by that evening her whole face had puffed up
01:17and then it was swollen red.
01:19So we went to emergency.
01:21They had no idea, didn't really give us any indication of what it could be.
01:26And when we finally had the bad burn at the end of last year,
01:31Ami's face was red and puffy and it would have been two days at school that that burn happened over.
01:37You know, only going outside during lunch and recess.
01:42And when we got referred to the dermatologist who quite quickly said that it was XP,
01:47there was a hope that there was an answer, but it was also incredibly confronting
01:53because it's not the answer that you want it to be.
01:56After Ami was diagnosed from the genetic testing, we then, Yvette and I were tested.
02:02And yes, it confirmed that she had XP, same as Ami did.
02:07So it's called XPD.
02:12In essence, their body can't repair the damage
02:16at a DNA level when their skin is exposed to UV light.
02:20So here we've got the UV meter, which measures very small amounts of UVA and UVB.
02:28And so when you point it up to the sky, you can see it climbing quite quickly.
02:33So we use this as a very handy tool for places that we don't know whether they're safe or not.
02:40And Ami finds it quite reassuring to be able to check.
02:44It's a bit sad that my sisters can't join me because,
02:49or they can, but it's hard for them to go out for long periods of time.
02:55Hands, please, check your boot. There it is.
02:58It takes about 10 to 15 minutes to get them sort of creamed up properly.
03:02And then put zinc on her lips. So that's just an extra protection for her lips.
03:07And then the final one is their special hood when they go outside and their UV gloves.
03:12So every bit of skin is completely covered. There's no way that UV can get to them.
03:19One of the first things we did once we got the diagnosis was to make our home safe.
03:24So we got all the windows in our house tinted, every single pane of glass.
03:28They're 10,000 times more likely to get skin cancer than you're right.
03:33And they're 2,000 times more likely to get other cancers
03:36because the cells just don't repair at our DNA level.
03:43So I'm going to go to the beach.
03:44Go to the beach, beach, beach, beach.
03:46When I first put it on, I was scared, but then I got used to it each day.
03:52And I stayed inside. And then when lockdown happened, I started going outside
03:59because there was less people. So I wouldn't be as embarrassed with everyone in front of me.
04:04And then I was so used to it when everyone came back.
04:07So my skin doesn't feel as sore if I protect it.
04:12And it hurts when it burns. So at least we've found something to fix that.
04:17And it won't happen anymore.
04:19We needed to be 10 or under for the girls to take their gear off.
04:23And we're still up in the hundreds.
04:27She feels sad when they can't be involved in social situations
04:32or just pop down to the beach quickly for a quick swim.
04:35You know, it's not a pop down for us.
04:37It takes quite a bit of preparation to get out of the door.
04:40So we're at 50 at the moment. It's still a bit high.
04:43So we have to wait a bit longer until it's safe.
04:46We can get the girls head the hoods off and gloves and they can go running around, be free.
04:51So, nearly there.
04:56OK, everyone, it's safe.
04:58Yeah, save me!
04:59Yeah, save me!
05:00Yeah!
05:01Puts off!
05:02Get it off!
05:03I'm free!
05:08We get to take off our gear!
05:11When you see the girls playing together at sunset without the gear on, it's just priceless.
05:15It's also bittersweet that, you know, you just wish that they could be like that during the day,
05:19but they just can't be.
05:20Our hopes and dreams for them are that they continue with the attitude they have at the moment,
05:25that they're not going to let this stop them.
05:29And for Nick and I to keep trying to support them in that way as well.
05:33Yeah, I just want them to have as a normal life as possible, really.
05:36Whether they have to wear a hood and gloves or not, you know, so be it.
05:40But to not let their condition hold them back and stop them from doing things they want to do
05:44and to achieve the dreams and desires and hopes that they want to achieve in life.
05:51Good morning, Courtney.
05:53Time to wake up.
05:54I'm Courtney Kajawa and I live with EB, which is Epidermolysis Bullosa.
06:00How's your pain this morning?
06:03Not too bad.
06:04I'm just going to change your back dressing a little bit.
06:07And it's a genetic skin disorder.
06:09I'm missing a layer of my skin, so it blisters really easily from friction.
06:14So I'm wrapped head to toe in dressings.
06:18Independence is something that's been very difficult to achieve with Epidermolysis Bullosa
06:26because her hands aren't able to function properly because of all the scarring she has.
06:32I just took off her dressings and I checked to make sure that all the areas are covered.
06:43Oh, look at them there.
06:45We found out at birth that Courtney had EB.
06:50Something we had to understand is that we couldn't prevent the disease from happening.
06:55We were just going to take one day at a time, one step at a time.
07:03We do her back first and then we do her arms and legs and then we do her feet.
07:11So when I was 18 years old, I was diagnosed with a cancer called squamous cell carcinoma,
07:20which is a common cancer for people with EB to get when they're older.
07:26And I got it on my right hand.
07:31And the timeline between receiving the diagnosis and getting the amputation was a few weeks.
07:37The first surgery was on my right hand and they were able to remove all of the cancer.
07:45So I didn't have to have another operation.
07:50This is Jessica. We were very fortunate to get her through a program called Wigs for Kids.
07:58It's been a hard transition, losing my hair and being able to accept myself.
08:05Jessica has just given you a lot more confidence.
08:09And it just matches so nicely with your original hair color.
08:12She was always a strawberry blonde.
08:14Yeah, it makes me feel like me a bit more.
08:18I've found a lot of accomplishments in my life.
08:22Just even being able to travel different places and get through each day with pain.
08:28I'm proud of the Coco and Shea company that we've started.
08:33It's helped a lot of people with EB and different skin issues.
08:37We made the coconut oil, different deodorant.
08:41And we made something called the Shea Bay spray, which is a spray for the room.
08:47Knowing that the coconut oil helps me so much,
08:49makes me feel really good that I'm able to help other kids and adults.
08:59So remember when you used to feel nervous when you would go out to places?
09:02Like how did that change for you?
09:04I think that I've grown to be confident in myself and to accept myself for who I am.
09:12Courtney is a very strong person.
09:16You look at her from the outside and you see someone who's so frail and broken in so many ways
09:21physically, but on the inside there's just a deep solid strength and confidence.
09:26I think living with EB is really difficult, but I think that some good advice would be just to
09:38try to accept yourself as who you are and try to be comfortable with yourself and just to
09:45always have hope that things will get better.
09:52What do you want to be when you grow up?
09:55An artist.
09:57An artist?
09:58Yeah.
09:58What kind of artist? What are you going to do?
10:01Pain.
10:03My name is Cindy and my daughter Nyla has ichthyosis.
10:08Icthyosis is a genetic skin disorder.
10:11Dry, flaky skin, so we have to keep her moisturized 24-7 all day.
10:17The reason being is because her skin grows so fast, she heals faster than a normal person.
10:23So say if she was to get a cut, right now, she's going to heal in two days.
10:28She's doing good though.
10:29And one of us was to get a cut, we're going to heal in about two weeks.
10:35So when Nyla was first born, they took her to examine her to figure out what it was.
10:41We ended up seeing a dermatologist and that too went more into detail.
10:45How have you had to adapt things in the house?
10:48A lot of snacks and food.
10:50Yeah, that's really good.
10:51Because her condition makes her hungry.
10:55So her sails are going faster.
10:58So her tabloid went fast, fast, fast.
11:00Yeah, so she's always hungry.
11:01Is she hungry or she's thirsty?
11:03We give her a full course, full plate.
11:05Yeah, she loves to eat.
11:06She's going to eat it 20 minutes later.
11:08Can I get a snack?
11:09Yeah.
11:14How many times do you have to give her a bath a day?
11:17I try to do two, but depending on how she is, I'll give her one.
11:20But it'll be like a long one.
11:22So even no matter how hard I scrub or let her soak, a minute later, like it'll be back flaky.
11:30I have multiple combs, so they get thinner and thinner.
11:33And then I'll get my thin one.
11:35And you have to like slowly, you're just like pulling skin back.
11:39That's it?
11:41Yeah.
11:41Just the tuba?
11:42Yeah, that's it.
11:45Her feet are probably the most difficult because this is where she gets the most cuts.
11:52So we have to make sure they're moisturized and she has a sock over it at all times.
11:57Just so we don't have any cuts.
12:03After she's done getting ready, she likes to dance.
12:10She loves, she likes dancing, she likes music.
12:12So she makes her own little TikTok videos and she watches herself all day.
12:20She knows how to work TikTok very, very well.
12:24Honestly, she pretty much does whatever she wants to do, yeah.
12:33She can go outside, but she can't go outside.
12:36In the summertime, we have a cooling vest for her.
12:39So it's a pink vest and then it has ice packs.
12:42Reason being is because her skin grows so fast that it blocks her sweat pores.
12:47So she can't naturally cool herself down with sweat.
12:49So that's where the ice packs come in to keep her cool.
12:54She's able to tell everybody herself now, like, nothing's wrong with me or it's just my skin and
12:58stuff and we make sure we give her that confidence.
13:04Where do we go sometimes?
13:11I let her express herself really, really good.
13:19Unless it's like some outrageous outfit, I'm like, okay, let me, let me help you a little bit.
13:27By other than that, sometimes I'll let her pick out what she wants.
13:32And she's very good at that.
13:38And she loves, she loves the attention.
13:42She's always happy.
13:45Freeze tag?
13:46Freeze tag?
13:47Yeah, I love freeze tag.
13:49Can you guys freeze?
13:50Yeah.
13:51Freeze!
13:53And go!
13:59I am currently changing my bedsheets.
14:02I do this if my skin's bad every day of the week because I shed so much and my skin
14:09also oozes and leaks.
14:11I have had eczema for as long as I can remember.
14:15Since my childhood, I have vivid memories of being wrapped up and cling film wrapped around my legs
14:21and my creases in my arms.
14:24I still used to do things like competitively swim.
14:27I used to run.
14:29I used to be very athletic.
14:30Didn't stop me doing anything at all compared to now.
14:35I'm currently filling the bath with water and adding an oat bag which basically helps take off
14:42all of this dead skin I have here.
14:45And it's pretty soothing and basically is the only thing that really helps.
14:50If it was just water, I'd be a crisp.
14:54I think I last showered about 10 months ago.
14:57Honestly feels the equivalent of acid.
15:00Someone throwing acid or something on your skin.
15:03It's like so painful.
15:05It feels like fire instantly burning.
15:10About a year ago, the steroids stopped working.
15:13I would put a cream on an area and it would almost retract and disappear for a few hours.
15:22But within the evening, it would come back again.
15:25The drugs that I was being offered were used for things like chemotherapy treatment.
15:31Weren't really an option for me.
15:33I started doing some research and then soon realised that I was going through topical steroid withdrawal.
15:40So I just decided that the best route was to go natural
15:43and hope that my skin will heal itself and get back to where it was.
15:47And basically this journey began.
15:51A lot of things are happening since not using the treatment.
15:54Straight after, I got severely inflamed and severe oedema everywhere.
16:00My body would just ooze and leak.
16:03It was like burning, itching, swelling, consistent flaking.
16:07And I'm talking like shed loads.
16:10Pardon the irony.
16:12At the moment, I can't really have a social life.
16:15Or it definitely puts big limitations on my social life.
16:18I guess it takes a long time.
16:21It just, it just slows everything down.
16:24I went to London for the first time in like 10 months.
16:27It took me like five hours to get ready.
16:29I think I spent the whole time thinking about
16:31how long it would take me to get back if something did happen.
16:34I'm doing it.
16:36Hello.
16:36Hello.
16:37How are you feeling?
16:38Yeah.
16:39My neck's quite sore, but not too bad.
16:41It's been worse.
16:43We've really had to adapt to the situation.
16:47Yeah.
16:47And I guess it's things you wouldn't even think about before.
16:51Brushing your hair daily is just such a struggle.
16:54The cuts on my hand are kind of like slits at this point.
16:59And so if my hair kind of gets caught brushing, it can be really painful.
17:04It's just easier to ask someone who's kind to do it for you.
17:09Let's give it a go then.
17:12Do you want me to platter or anything?
17:14That's looking good.
17:16Yeah, it's so hard watching Daisy go through this.
17:18Obviously myself and my parents can't do anything about it.
17:22So we can only be supportive and that's kind of as much as we can do.
17:27I'm just organising to go meet Katie, who's my friend I do my podcast with.
17:33I'll give her a call.
17:35She also has a skin condition.
17:38So I have various creams.
17:41Antihistamines.
17:43Ibuprofen in case it's really painful and the information's really bad.
17:48Toilet roll in case I have like my eye started to ooze.
17:52More compression gloves in case I need to change.
17:54Sometimes they get damp kind of thing.
17:57If I couldn't pack all of this stuff, I don't think I'd leave the house.
18:00It's like a safety net, isn't it?
18:02I don't know what would happen to my skin if it wasn't there.
18:13So we both met online actually.
18:16And then within like a week we decided that we should do something about awareness.
18:20Because there's just no awareness for the skin conditions.
18:22And we said we should make a podcast.
18:25But there's no one like talking about like their personal experiences of their skin.
18:28So like and stuff that we can laugh about together.
18:30But on your own you'd probably cry about.
18:32Yeah no for sure.
18:33I think I probably admire how like strong she is.
18:36And like open actually.
18:38Because she's really open online about talking about her skin.
18:41And she's not scared to say oh I'm literally I'm having a really bad time.
18:47For the future I'm hoping to have good skin.
18:51Hopefully I can inspire other people to be open about their skin.
18:56And not feel like it's something to be ashamed about.
18:58Although it's raining today it won't always rain.
19:02And there will be sunshine again.
19:05My mum helps me with getting dressed and putting on my shoes every single day.
19:13It's difficult for me because of my hands.
19:16A lot of things that I can't do.
19:19Scleroderma is an autoimmune disease.
19:21Harrison has a skin-based scleroderma and he has the rarest form.
19:25He's the only one in Australia with the form he has.
19:29And there's only 30 in the world.
19:30It's a build up of collagen in his skin.
19:32So it makes his skin very tight.
19:34Creates contractures in his bones.
19:36He can't flex his feet or move his hands at all.
19:40That's why I got bandages on my feet and my hands.
19:43It has like scabs under it and that's from scleroderma.
19:46There's no cure for this disease.
19:50So the medications Harrison has every day is the tablet is periactin and that
19:59helps his appetite and stops him scratching.
20:03Also has methadone for pain and the last one is just an antibiotic
20:09to stop his skin getting any staph infections.
20:13When I was very young it used to make it wrinkly and all scratchy and stuff
20:21and skin starting to peel off and all that.
20:25And your skin was very tight?
20:26It was very tight.
20:28They said I had two years to live but I was four years old then and look at me now,
20:34I'm 12.
20:36So I survived it.
20:39Lisa, when did you realise that Harrison was a talented artist?
20:44I think from kindergarten, probably three year old, he was always very arty.
20:50The longer we spent in hospital the more he'd sit and draw and colour.
20:53When he got his first finger amputated it was from his right hand
20:57and he managed to teach himself to be left-handed and that's how he draws now.
21:01When I drew my drawing it makes me feel like amazing, feel like I could do anything.
21:07Why did you have to have your fingers amputated?
21:10Because if I left them it would be a very, very bad decision.
21:15If I left it, I had to cut off my whole hand.
21:19When they told you that you had to let some of your fingers, how did you feel?
21:22I feel a little bit sad but I felt like it was for the best.
21:28How many surgeries have you had now?
21:31One hundred.
21:32Over a hundred.
21:33So we go in every month to get his bandages cleaned and all washed properly
21:39and then when he has his ECP or photophoresis he has to go under general anaesthetic
21:45and that's what saved his life.
21:46We started this treatment in December 2020 which is fortnightly at the moment.
21:50They take his blood and clean it and then they put UV rays into the blood and put it through
21:57like
21:57a solar panel type thing which gives us a blood product which we re-infuse into his body
22:02and that stops his condition progressing.
22:05It's been very significant for him.
22:07His skin is much looser.
22:09He can straighten his legs out.
22:11He walked a lot on his tippy toes so his legs were bent.
22:13I feel much better, I feel energised, I feel like I'm hyped, I feel very happy.
22:20I was the first one to have it in the world so it was very exciting for trying it out.
22:27Considering everything he's gone through he just goes on living life like he's normal,
22:33if you could call it that.
22:34I think he's pretty courageous, takes everything on.
22:38Especially someone with, you think of his ability, really proves everyone wrong.
22:44My mum and dad did everything they can to making me think about all the good things in my life.
22:53I'm just very sad that people can have so much fun without me playing sports that I can't do.
23:00You know, just being on the sidelines, just watching them, have fun.
23:05I just want to be stronger.
23:07You're the strongest person I know.
23:10You know, I'm like, good at sports.
23:12You are good at sports.
23:14Like, I could play with my brother instead of getting hurt.
23:17I know, I know.
23:18Enough.
23:21It's alright.
23:23Still do plenty of stuff, like doing sports, playing soccer.
23:27Running?
23:28Running, I do running.
23:29I got to stay cross country last year.
23:32I got a trophy for coming second.
23:34So, I'm doing a lot of things.
23:36Aren't you worried about hurting yourself?
23:38No, I'm not.
23:40I'm not.
23:41I'm very strong and I don't care.
23:44I'm going to do whatever it takes.
23:49Hi.
23:50Hi buddy.
23:52How are you?
23:53Good.
23:53Good to see you mate.
23:55Good to see you too.
23:56Ready for physio?
23:58Yeah.
23:58Yeah, let's go get your shoes on.
24:00Hey.
24:01I actually first met Harrison about six years ago when he was at the Royal Children's.
24:06I was a nurse there.
24:07And then I've been his support care worker the last year.
24:10And we hang out a couple of times a week.
24:12We just try to hang out and have fun.
24:14And also we go to physio, osteo.
24:16Today we're going to a physio class.
24:19The therapy Harrison receives every week.
24:21He'll get a massage with the osteo and then he has exercise class with May.
24:26Just to keep his body flexible and moving.
24:30Do people ever say anything negative to you about your condition?
24:33Some people really stare at me in public.
24:37Most of the kids, even teenagers stare at me sometimes.
24:41A lot of adults do it.
24:42They don't just have a quick look.
24:44They like fully, fully stare.
24:46And it's like, I just find it really rude.
24:49I get it.
24:50They're interested and, but talk to him.
24:52You don't have to just stare at him and make him feel uncomfortable.
24:54Why do you look weird?
24:55That's what most of the people say to me.
24:58Why does your hands look like this?
25:01Why do you have bandages on?
25:02Like all of those.
25:04I keep telling them that I have a condition, but they won't listen.
25:09They don't understand what I'll go through.
25:11Yeah, it's confronting sometimes, but we just get on with it, don't we?
25:17Yeah.
25:18If you see a disability, don't stare at them.
25:22Don't call them names.
25:25Just please don't do that.
25:27Be kind.
25:27Just be kind.
25:29Not hard, is it?
25:29Not hard.
25:31How's your body feeling today?
25:33Good.
25:33Are your feet okay?
25:35Are they not too sore today?
25:37No.
25:37No.
25:38He's getting a lot stronger and he's had a bit of a few ups and downs the last kind of
25:4212 months with pain, but he's been able to maintain his strength and his fitness and exercise
25:48capacity, which is something that we're starting to work on a little bit more now.
25:51It's about prescribing exercise specific to the condition.
25:55So for H, it's about keeping him mobile, keeping him strong, keeping him active for as long as
26:01possible and having a bit of fun while we do it.
26:03So I just love playing soccer.
26:06That's my main sport.
26:07And I really hope that Christiana are in there with all seasons.
26:11How proud are you of Harrison?
26:19Don't cry.
26:23I'm super proud.
26:26He's an incredible person.
26:28After all he's been through, he still smiles and lights up a room.
26:37And I just wish everyone to just take a page out of his book because he makes life look easy.
26:43And it's not for him.
26:47But you wouldn't know.
26:49Just love him.
26:52People love him.
26:55I just love helping people, taking care of people and all of that.
27:01What would you like to tell other kids who have rare conditions as well?
27:05Just please don't give up.
27:07We got this.
27:08I'm here with, I'm here for you.
27:12These are my pain medications.
27:15I usually take these three or four times a day on top of a pain patch that I wear seven
27:21days a week.
27:22Epidermolysis bullosa is a rare genetic skin condition.
27:26My body cannot create collagen, which is basically
27:29the glue that holds my layers of skin together.
27:33So I'm extremely fragile and delicate and I can have wounds up to 80% of my body.
27:41So the nurses that are here right now, one of them comes twice a week,
27:45the other comes three times a week.
27:47I have nurses and I have medical staff that come in and do a dressing change.
27:52Taking all the old bandages off and redressing all the wounds,
27:55which probably is the longest part of the whole process.
27:59On Monday, Wednesday, Friday, it takes four hours.
28:03And Tuesday, Thursday, Saturday, Sunday, it takes an hour.
28:07Why is it so important to be changed so frequently?
28:10I'm extremely open to infections like sepsis.
28:14I'm prone to skin cancer.
28:15So if I don't look after my skin, my skin won't look after me.
28:19Currently, there's no cure for EB and it is a progressive condition.
28:23So I will get worse over time.
28:25And I've already seen the side effects of that.
28:28My wounds are a lot worse than they used to be.
28:31My hands have fused together.
28:33I have a total of four whole fingers left.
28:36I've lost all my toes.
28:38They have completely fused together.
28:40So about four years ago, I stopped fully walking.
28:43I could be a lot worse, but I could be a lot better.
28:48Hello.
28:49How are you?
28:51Do you want to see?
28:52Yes, please.
28:54This scrapbook is dedicated to my beautiful little girl, Claudia.
28:58It's a collection of all our happy memories, your mom.
29:03I look spaced out now.
29:05I am, yeah.
29:06You could see the tongue was swollen.
29:09Yeah, yeah, yeah, yeah.
29:10You were always happy.
29:12Yeah.
29:12Always smiling.
29:15That's the day we were taking you home and we had got the diagnosis,
29:20the full diagnosis, the same day.
29:22When we were given the diagnosis, we were shocked.
29:26EB can't be detected in the womb, so it only unfolded.
29:30When Claudia was born, that was our first experience of traveling with you.
29:35It was hard.
29:36So your dad is in the pool with you there and you're swimming with all your bandages on.
29:40And I stood at the bank and dad put you up like that.
29:43And then I wrapped you in a towel and I had to run from there through the foyer, the hotel,
29:48up into the room and then start your bandages then.
29:51It was hard for my parents.
29:53I know that.
29:54They really struggled.
29:56They're doing this for the first time.
29:57They don't know what they're doing.
29:59So they were doing what they could on instinct.
30:03It's like being in a different world where you have no answers and nobody really gave you the answers at
30:08the start.
30:09And you only found out how hard it was going to be as it was happening.
30:15From the day that Claudia was born, our lives changed forever.
30:20I dissociate from these pictures because it doesn't feel like me.
30:24Like I look at that baby and it doesn't look like me.
30:28With the brown hair and the good skin, it looks like a different child.
30:31I've always struggled with my looks, especially as I've gotten older.
30:36The expectations of a girl are so high and the standards you have to live up to.
30:45My condition goes against all of those things.
30:48For most of the time in secondary school, I was ignored.
30:51I was shunned, completely looked over.
30:54I've always struggled with friendships.
30:56Unfortunately, I don't have friends anymore.
31:01You can't fix it as a parent.
31:03You can't make friends for your child.
31:06We watched her for six years suffer.
31:09The loneliness, the isolation.
31:12I'm the only person that understands myself.
31:16And sometimes I couldn't explain to my parents that they can't say,
31:21I know how you feel, or I wish I could take it away from you,
31:25when you know that's never going to happen.
31:27So there's no point in even saying that to someone.
31:31But also, they have been always there for me.
31:34And I know I can go to them.
31:36So I'm very lucky to have the support system that I do.
31:39And I think that's how I got through most of it.
31:42I think it made her stronger.
31:44I admire that she's sitting here today.
31:46Is it like she has been to hell and back?
31:49And it's still here, still fighting physically and mentally.
31:55When I was becoming a preteen teenager, I was the generation that watched a lot of
32:02MUAs on YouTube.
32:04So I'm going to start with...
32:07I think that kind of turned on a little spark for me.
32:11It's like, I'd love to create something like that.
32:14That was something I could set my mind on and have a goal to reach towards.
32:18Which is what I've done.
32:22So I started content creation when I was about 13.
32:26Because people had seen me for Deborah Island many times, my charity.
32:32I had been on TV a few times or in a newspaper article.
32:36I think once they saw that I was on my own social media,
32:40people liked to see that side of things of me.
32:43Not just from a campaigning point of view.
32:45I've had lovely messages of people saying that I've helped them.
32:51And other people with my condition have reached out and said that
32:54I really look up to you and it's lovely to hear.
32:58So I'm doing a full natural dram look.
33:02This is the look that makes me feel much pretty.
33:06Once I've gotten into my last few months of school,
33:09I kind of said to my mum and dad,
33:11I think there's this course I'd like to attend.
33:14College was just teaching me the professionalism of it
33:18and how you can become big in the industries.
33:23I finished about a year ago and hope to be working very, very soon.
33:31What do you think of Claudie's new look?
33:34I love it. She's very talented.
33:37To watch her doing it is actually, it's amazing to watch.
33:41It's like a pure artist at work.
33:43So I think she has the eye and the talent to go as far as she wants.
33:51I have many dreams and aspirations.
33:54I hope to maybe do fashion someday.
33:58I'd like to work with brands, maybe make my own makeup line one day.
34:03But you know what, I'm just happy to be here right now.
34:07And whatever tomorrow brings, it brings.
34:10You'd have to live with Claudie and experience her life to
34:14be aware of the challenges that have been put in her way.
34:17And she has overcome every single one.
34:20She's put her head down, it's what she wants to do.
34:23She passed her grades, went to college, the future is on its way.
34:27My achievements have definitely boosted my self-confidence.
34:32Realising that, hey, you can do great things, no matter what the circumstances are.
34:37You have this disability, but you have to fight the odds and bring your legs.
34:43Have you been doing your daddy's makeup any time soon?
34:45I have suggested that.
34:46She promised.
34:47I did suggest.
34:47She still hasn't done it yet.
34:49I want false eyelashes on you.
34:54Growing up with ichthyosis, it has been difficult.
34:58My skin was worser when I was younger.
35:00It was drier and it was hard because every time I went outside the house,
35:06people stared at me or whispered bad things.
35:10I've never been on a date before.
35:12I think that I've been very insecure about my skin.
35:16I have to be confident because otherwise, I don't really know, but it has made me strong.
35:23I don't wish to be someone else.
35:26So today I'm going for a blind date.
35:30My cousin is going to help me with my makeup and hair.
35:34So what are you going to wear tonight?
35:36I think I'm going to wear what I have on right now.
35:40Do you think it's good for a date?
35:43Yeah, I'm nervous.
35:45My expectations for the date.
35:47For me, it's very, very important that the person is funny and it's easy to talk to because
35:54I like to talk to people.
35:56I'm ready for the date.
35:58Good luck.
36:02I don't think I have a type of woman.
36:05The most important for me is like the personality.
36:07If the personality is good, I'm falling in love.
36:09We see what happens.
36:11Hello.
36:12Hello.
36:13How are you?
36:14I'm good, and you?
36:15I'm good, thank you.
36:16What's your name?
36:17I'm Natalie.
36:17Natalie.
36:18What is yours?
36:19Your name?
36:20William.
36:20My name is William.
36:21Yeah.
36:22Thank you so much.
36:24I like your shirt, by the way.
36:27So what's your favorite food?
36:30I really like just like really Swedish meatballs with wings.
36:35I love sushi.
36:36I always eat like everything.
36:38I just decide fish.
36:41You don't like fish?
36:42I hate fish.
36:43You like sushi, but you don't like fish.
36:45What is that?
36:46I hate fish, like every kind of fish I hate.
36:52So can you tell me about your skin condition?
36:55Yeah, I'm born with Ictiasis confetti.
36:59My skin is dry and it grows too fast.
37:03I'm red, obviously, and I have to like put cream on every day.
37:10What happens if you don't like it?
37:12I get really, really dry.
37:14You're really dry.
37:15Yeah.
37:15Does it like itching and stuff?
37:16Yeah, itchy and it like, you know, get pale or not pale, but you know.
37:20Yeah, you can peel off skin and stuff.
37:22Yeah, exactly.
37:22Okay, yeah, yeah.
37:22So what do you like to do?
37:24Do you like have any hobbies or?
37:27Partying.
37:28Partying.
37:28Everybody loves to party.
37:30Do you have any hobbies that you like?
37:33Beside my job, I'm a photographer.
37:35I'm a photographer and a videographer too.
37:37So you're a model, so.
37:39Yeah, it's fun.
37:40It's nice, nice.
37:41Yeah, I'm a model too.
37:42Oh, you are?
37:43Yeah, I've been modeling in Dubai.
37:45Oh, wow.
37:46Start home.
37:46I decided to post some pictures on a group of Facebook for models and photographers.
37:53And if anyone would be interested in taking pictures, that's a dream I've had for a long time.
37:58So we booked a photo shoot and then I posted them on my Instagram and I got really positive feedback.
38:07And that's how it started.
38:09I get more confident being in front of the camera and being out there because then it's
38:15because of my skin and I feel like I'm doing a positive thing.
38:19I think also that maybe I can help other people with their insecurities.
38:25I think it's going good.
38:27Yeah, he's really nice.
38:28I don't think he had a big deal with my skin condition.
38:33The first impression was maybe, oh, it was my skin.
38:36But now he talks to me and that we have like a normal conversation and stuff.
38:41All right, you ready?
38:43I'm ready.
38:43All right, let's go.
38:45Very good time, yeah.
38:46That was really nice.
38:47Yeah.
38:48You're easy to talk to.
38:49Yeah, same to you, yeah.
38:51Do you think you're going to come out again?
38:52Maybe.
38:53Maybe.
38:54We can see.
38:54We're following each other on Instagram, so we'll probably catch up there.
38:58It was fun, nice to meet her.
39:00She's a beautiful person.
39:02I like that she loves to do the same thing as me and I love her smile in her eyes.
39:07She's a person with just like a different skin condition as me and that doesn't matter with me.
39:13He's a good person and he's funny to talk to and easy.
39:17It feels like we have almost the same humor and stuff, so it feels nice.
39:21Has this dating experience taught you anything?
39:24It was really fun and it felt easier than I thought.
39:28It has taught me that just like do it, it's not as scary as I thought it would be.
40:04It felt like I had to do it because of the kids, nobody knew what it was.
40:09I was the first here in the region.
40:11I had a feeling of feeling, but I always had to get to my mother, my mother, my mother, and
40:17tell me what happened.
40:19And my mother would always calm me.
40:22It was because she took a lot of names, a lot of preconceitos, I didn't understand it.
40:29Even if she had already passed, I say that she was very guerrero.
40:33Very, very, very, very.
40:36The doctor discovered that I was with a complicated gestation, I wanted to do abort, and I said that it
40:43was not to do abort, that I would be able to do abort, that I would be able to do
40:46abort.
40:47But she came with a malformation, she said that she was like, she will come.
40:52She said that she was alive, she was walking.
41:02I think she never took a step, even when I arrived here with the tattoo.
41:09I always told her to do it, she said that she was going to do it.
41:13It was my dream since I was little, but my mother didn't leave it, by the fact that she was
41:18going to do it.
41:19What do you think about the tattooing?
41:22What do I think?
41:23Because it has a clean body, it has a clean body.
41:26I don't like it.
41:27I don't like it.
41:28I don't like it.
41:29I don't like it.
41:30But the doctor told me that she could do it.
41:32But she came here.
41:34Was it the first one?
41:35No.
41:36She did it for me to see it.
41:40The day I saw it, it was the color of her.
41:45Every one, every one.
41:46And I was happy.
41:47Yeah, I was happy.
41:47The people who have the same condition as mine, after I started taking a tattoo,
41:53they asked me, ah, my Coloma, did you make a reaction?
41:56Did I make a reaction?
41:57Did I make a reaction?
41:58Did I make a reaction?
41:58Could I do it too?
42:00I always said, well, I didn't make a reaction until now,
42:04I made a reaction, or didn't that.
42:08I don't care about anything, but I also say that it's very relative from the skin to the skin.
42:15And even if it's the same color, maybe it's the same color that she doesn't accept her rejection, right?
42:21I started doing makeup since I was 9 years old, when I took my mom's makeup and wanted to experiment.
42:29What I like to use is more illuminator, delineator and cils bostis.
42:35I use any brand or any makeup, it never gave me any reaction.
42:41When you look at the mirror, what do you see?
42:44Forma vaidosa.
42:47You don't have to be afraid of anything, you don't have to be afraid of anyone.
42:51You don't have to be afraid of anyone.
42:51You can do everything if you want.
42:55And when we use makeup, we get more copiated, we get more auto-estimated,
43:01but I always say it's you.
43:04The makeup is beautiful, it's beautiful, it's beautiful.
43:07But the important thing is within yourself, right?
43:10So, regardless of the condition that you have,
43:15regardless of what you are,
43:17this can't prevent you from anything,
43:20from doing what you like,
43:21from doing what you really feel about in your heart.
43:24Be careful, not obligate your opinion.
43:28You can do it with the things you need to go.
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