Up next in 10
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
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0:00
Ami and Taya have been diagnosed with xeroderma pigmentosum
0:04
They're 10,000 times more likely to get skin cancer than URI. I live with Evie. It's a genetic skin disorder
0:12
I'm missing a layer of my skin, so it blisters really easily from friction
0:17
Nyla has ichthyosis. She's able to tell everybody herself now, like, nothing's wrong with me or it's just my skin
0:23
and we make sure we give her that confidence. I have severe eczema. I'm currently going through topical steroid withdrawal
0:29
I just decided that the best route was to go natural and hope that my skin will heal itself and get back to where it was
0:35
Harrison has an autoimmune disease. It makes his skin very tight. He can't flex his feet or move his hands at all
0:42
He's the only one in Australia with the form he has and there's only 30 in the world
0:46
My rare skin condition affects over 80% of my body. Currently there's no cure and it is a progressive condition
0:54
I'm born with ichthyosis confetti. My skin is dry and grows too fast
1:00
I was born with a lamelar icitiose. It's a genetic disease that has no cure
1:06
So when Ami was really young, that's when she had her first burn
1:10
at about three and a half months old. She didn't settle in the afternoon, and by that evening
1:15
her whole face had puffed up and then it was swollen red
1:19
So we went to emergency. They had no idea, didn't really give us any indication
1:24
indication of what it could be. When we finally had the bad burn at the end of last year
1:31
Ami's face was red and puffy and it would have been two days at school that that burn happened
1:37
over, you know only going outside during lunch and recess. And when we got referred to the
1:44
dermatologist who quite quickly said that it was XP, there was a hope that there was an answer
1:50
but it was also incredibly confronting because it's not the answer that you want it to be
1:56
After Amy was diagnosed from the genetic testing, we then, Yvette and I and Tayo were tested
2:02
and yes, it confirmed that she had XP, same as Amy did
2:06
Thank you. It has salt on it. So it's called XPD. In essence, their body can't repair the damage at a DNA level
2:17
when their skin is exposed to UV light. So here we've got the UV meter which measures very small amounts of UVA and UVB
2:28
and so when you point it up to the sky you can see it climbing quite quickly
2:33
So we use this as a very handy tool for places that we don't know whether they're safe or not
2:40
and Ami finds it quite reassuring to be able to check. It's a bit sad that my sisters can't join me because, well they can but it's hard for them to go out for long periods of time
2:53
Hands please, chikaboot. There it is. It takes about 10 to 15 minutes to get them sort of creamed up properly and then put zinc on her lips
3:04
So that's just an extra protection for her lips. And then the final one is their special hood when they go outside and their UV gloves
3:11
gloves. So every bit of skin is completely covered. There's nowhere that UV can get to them
3:16
One of the first things we did once we got the diagnosis was to make our home safe. So we got
3:25
all the windows in our house tinted, every single pane of glass. They're 10,000 times more likely to
3:31
get skin cancer than URI and the 2,000 times more likely to get other cancers because the
3:37
cells just don't repair at our DNA level. Go to the beach
3:46
When I first put it on, I was scared, but then I got used to it each day
3:52
And I stayed inside. And then when lockdown happened, I started going outside because there was less people
4:00
So I wouldn't be as embarrassed with everyone in front of me. and then I was so used to it when everyone came back
4:07
so my skin doesn't feel sore if I protect it and it hurts when it burns
4:13
so at least we've found something to fix it and it won't happen anymore
4:19
We needed to be 10 or under for the girls to take their gear off
4:22
and we're still up in the hundreds. She feels sad when they can't be involved
4:30
in social situations situations or just pop down to the beach quickly for a quick swim
4:35
You know, it's not a pop down for us. It takes quite a bit of preparation to get out of the door
4:40
We're at 50 at the moment. It's still a bit high, so we have to wait a bit longer until it's safe
4:46
We can get the girls head and hoods off and gloves and they can go running around, be free
4:50
So, nearly there. OK, everyone, it's safe. Yeah, baby
5:00
Hands up! Get it off! I'm free! Woo! We get to take off my gear
5:10
When you see the girls playing together at sunset without the gear on, it's just priceless
5:15
It's also bittersweet that, you know, you just wish that they could be like that during the day, but they just can't be
5:20
Our hopes and dreams for them are that they continue with the attitude they have at the moment
5:25
that they're not going to let this stop them. and for Nick and I to keep trying to support them in that way as well
5:33
Yeah, I just want them to have as a normal life as possible, really, whether they have to wear a hood and gloves or not, you know, so be it
5:40
But to not let their condition hold them back and stop them from doing things they want to do
5:44
and to achieve the dreams and desires and hopes that they want to achieve in life
5:51
Good morning, Courtney. Time to wake up. I'm Courtney Kajawa and I live with EB
5:56
which is epidermolysis bullosa. How's your pain this morning? Not too bad
6:04
I'm just going to change your back dressing a little bit. And it's a genetic skin disorder
6:09
I'm missing a layer of my skin so it blisters really easily from friction
6:14
so I'm wrapped head to toe in dressings. Independence is something that's been very difficult to achieve with epidermolysis bullosa
6:25
because her hands aren't able to function properly because of all the scarring she has
6:32
I just took off her dressings, and I checked to make sure that all the areas are covered
6:43
Aw, look at them there. We found out at birth that Courtney had EB
6:50
Something we had to understand is that we couldn't prevent the disease from happening
6:55
We were just going to take one day at a time, one step at a time
7:03
We do her back first, and then we do her arms and legs, and then we do her feet
7:12
So when I was 18 years old, I was diagnosed with a cancer called squamous cell carcinoma
7:20
which is a common cancer for people with EB to get when they older And I got it on my right hand and the timeline between receiving the diagnosis and getting the amputation was a few weeks The first surgery was on my right hand
7:41
and they were able to remove all of the cancer so I didn't have to have another operation
7:48
This is Jessica. We were very fortunate to get her through a program called Wigs for Kids
7:58
It's been a hard transition, losing my hair and being able to accept myself
8:05
Jessica has just given you a lot more confidence. It just matches so nicely with your original hair color. She was always a strawberry blonde
8:14
Yeah, it makes me feel like me a bit more. I've found a lot of accomplishments in my life
8:21
just even being able to travel different places and get through each day with pain
8:27
I'm proud of the Cocoa and Shea company that we've started it's helped a lot of people with EB and different skin issues
8:37
we made the coconut oil, different deodorant and we made something called the Shea Bay Spray
8:43
which is a spray for the room. Knowing that the coconut oil helps me so much
8:49
makes me feel really good that I'm able to help other kids and adults
8:59
So remember when you used to feel nervous when you go out to places, like, how did that change for you
9:04
I think that I've grown to be confident in myself and to accept myself for who I am
9:13
Courtney is a very strong person. You look at her from the outside and you see someone who's so frail and broken in so many ways physically
9:22
but on the inside there's just a deep solid strength and confidence
9:27
I think living with a B is really difficult, but I think that some good advice would be
9:36
just to try to accept yourself as who you are and try to be comfortable with yourself
9:43
and just to always have hope that things will get better. What do you want to be when you grow up
9:55
An artist. Mm-mm. An artist? Yeah. What kind of artist? What are you going to do? Paint
10:03
My name is Cindy and my daughter Nyla has ichthyosis. ichthyosis is a genetic skin disorder dry flaky skin so we have to keep her moisturized
10:15
24 7 all day reason being is because her skin grows so fast she heals faster than a normal person
10:23
so say if she was to get a cut right now she's gonna heal in two days she's doing good though
10:29
and one of us was to get a cut we're gonna heal in about two weeks
10:32
so when nyla was first born they took her to examine her to figure out what it was
10:40
we ended up seeing a dermatologist and that too went more into detail how have you had to adapt
10:46
things in the house a lot of snacks and food yeah a lot of we have to keep her condition
10:52
makes her hungry so her sales are her sales are going fast fast fast so her tabloid fast fast
10:59
fast. Yeah. So she's always hungry. She's hungry or she's thirsty. We give her a
11:03
full course, full plate. Yeah, she loves to eat. She's going to eat it 20 minutes later
11:07
Can I get a snack? Yeah. Bath, bath. How many times do you have to give her a bath a day
11:16
I try to do two, but depending on how she is, I'll give her one, but it'll be
11:21
like a long one. So even no matter how hard I scrub
11:25
or let her soak, a minute later, like, it'll be back flaky. I have multiple combs, so they get thinner and thinner, and then I'll get my thin one, and
11:35
you have to like slowly, you're just like pulling, just getting back. That's it? Just the two bucks
11:43
Just. Her feet are probably the most difficult because, so this is where she gets the most cuts
11:52
so we have to make sure they're moisturized, and she has a sock over it at all times
11:56
just so we don't have any cuts. After she's done getting ready
12:05
she likes to dance. Dancing. She likes dancing. She likes music. She makes her own little TikTok videos
12:15
and she watches herself all day. She knows how to work TikTok very, very well
12:24
Honestly. She pretty much does whatever she wants to do. She can go outside, but she can't go outside
12:35
In the summertime, we have a cooling vest for her. So it's a pink vest and then it has ice packs
12:41
The reason being is because her skin grows so fast that it blocks her sweat pores
12:46
So she can't naturally cool herself down with sweat. So that's where the ice packs come in to keep her cool
12:53
She's able to tell everybody herself now, like, nothing's wrong with me or it's just my skin and stuff, and we make sure we give her that confidence
13:04
Where do we go sometimes? Did we go shopping? I let her express herself really, really good
13:13
unless it's like some outrageous outfit I'm like okay let me help you a little bit
13:24
but in that sometimes I'll let her pick out what she wants
13:29
and she's very good at that and she loves
13:40
she loves the attention She's always happy. Freeze tag? I love freeze tag
13:47
Can you guys freeze? Freeze! And go! I'm currently changing my bedsheets. I do this if my skin's bad every day of the week
14:05
Because I shed so much and my skin also oozes and leaks
14:10
I have had eczema for as long as I can remember. Since my childhood, I have vivid memories of being wrapped up and cling film wrapped around my legs and my creases in my arms
14:23
I still used to do things like competitively swim, I used to run, I used to be very athletic
14:29
It didn't stop me doing anything at all compared to now. I'm currently filling the bath with water and adding an oat bag, which basically helps
14:42
take off all of this dead skin I have here and is pretty soothing and basically is the
14:48
only thing that really helps. If it was just water, I'd be a crisp
14:54
I think I last shower about 10 months ago Honestly feels the equivalent acid Someone throwing acid or something on your skin It like so painful
15:05
It feels like fire instantly burning. About a year ago, the steroids stopped working
15:14
I would put a cream on an area and it would almost retract and disappear for a few hours
15:22
But within the evening, it would come back again. The drugs that I was being offered were used for things like chemotherapy treatment
15:30
weren't really an option for me. I started doing some research and then soon realised that I was going through topical steroid withdrawal
15:40
So I just decided that the best route was to go natural and hope that my skin will heal itself and get back to where it was
15:47
And basically this journey began. A lot of things are happening since not using the treatment
15:54
Straight after I got severely inflamed and severe oedema everywhere, my body would just
16:01
ooze and leap. It was burning, itching, swelling, consistent flaking and I'm talking like shed loads
16:10
Pardon the irony. At the moment I can't really have a social life or it definitely puts big limitations
16:17
on my social life, I guess. It takes a long time. It just slows everything down
16:24
I went to London for the first time in like 10 months. It took me like five hours to get ready
16:29
I think I spent the whole time thinking about how long it would take me to get back
16:33
if something did happen. Hello. Hello. How are you feeling? Yeah. My neck's quite sore, but not too bad
16:41
It's been worse. We've really had to adapt to the situation. Yeah
16:47
And I guess it's things you wouldn't even think about before. Brushing your hair daily is just such a struggle
16:54
The cuts on my hand are kind of like slits at this point
16:59
And so if my hair kind of gets caught brushing, it can be really painful
17:04
It's just easier to ask someone who's kind to do it for you
17:09
Let's give it a go then. Do you want me to platter or anything
17:14
That's looking good. Yeah, it's so hard watching Daisy go through this
17:18
Obviously myself and my parents can't do anything about it, so we can only be supportive
17:24
and that's kind of as much as we can do. I'm just organising to go meet Katie
17:31
who's my friend I do my podcast with. I'm going to give her a call
17:35
She also has a skin condition. So I have various creams, antihistamines
17:42
Ibuprofen in case it's really painful and the information's really bad. Toilet roll in case I have like my eye started to ooze
17:52
More compression gloves in case I need to change. Sometimes they get damp kind of thing
17:57
If I couldn't pack all of this stuff, I don't think I'd leave the house. It's like a safety net, isn't it
18:02
I don't know what would happen to my skin if it wasn't there. Hey, how you doing? Good
18:11
Thank you. Yeah, good. So we both met online, actually. And then within like a week, we decided that we should do something about awareness
18:20
because there's just no awareness for the skin conditions. And we said you should make a podcast
18:25
But there's no one like talking about like their personal experiences of their skin. So like and stuff that we can laugh about together, but on your own, you'd probably cry about
18:32
Yeah, no, for sure. I think I probably admire how like strong she is and like open actually
18:37
because she's really open online about talking about his skin. and she's not scared to say
18:42
oh, I'm literally, I'm having a really bad time. For the future, I'm hoping to have good skin
18:51
Hopefully I can inspire other people to be open about their skin
18:55
and not feel like it's something to be ashamed about. Although it's raining today, it won't always rain
19:02
and there will be sunshine again. My mum helps me with getting dressed
19:09
and putting on my shoes every single day. It's difficult for me because of my hands
19:16
A lot of things that I can't do. Scleroderma is an autoimmune disease
19:21
Harrison has a skin-based scleroderma and he has the rarest form. He's the only one in Australia with the form he has
19:28
and there's only 30 in the world. It's a buildup of collagen in his skin, so it makes his skin very tight
19:34
creates contractures in his bones. because he can't flex his feet or move his hands at all
19:40
That's why I got bandages on my feet and my hands. It has like scabs under it and that's from sclomoderma
19:46
There's no cure for this disease. So the medications Harrison has every day is
19:54
the tablet is periactin and that helps his appetite and stops him scratching
20:03
It also has methadone for pain. And the last one is just an antibiotic to stop his skin and get any staph infections
20:12
When I was very young, it used to make it wrinkly and all scratchy and stuff
20:21
And skin started to pull off and all that. And his skin was very tight
20:26
It was very tight. They said I had two years to live, but I was four years old then
20:32
and look at me now, I'm 12. So I survived it. Lisa, when did you realise that Harrison was a talented artist
20:44
I think from kindergarten, probably three-year-old. He was always very arty. The longer we spent in hospital, the more he'd sit and draw and colour
20:53
When he got his first finger amputated, it was from his right hand and he managed to teach himself to be left-handed
21:00
and that's how he draws now. When I do my drawing, it makes me feel like amazing
21:05
feel like I could do anything. Because if I left them, it would be a very, very bad decision
21:15
If I left it, I had to cut off my whole hand
21:22
I feel a little bit sad, but I feel like it was for the best
21:28
How many surgeries have you had now? 100. Over 100. So we go in every month to get his bandages cleaned and all washed properly
21:39
and then when he has his ECP or photophoresis he has to go under general anaesthetic and that's
21:45
what saved his off. We started this treatment in December 2020 which is fortnightly at the moment
21:50
they take his blood and clean it and then they put UV rays into the blood and put it through like
21:57
like a solar panel type thing, and which gives us a blood product which we re-infuse into his body
22:02
and that stops his condition progressing. It's been very significant for him
22:07
His skin is much looser. He can straighten his legs out. He walked a lot on his tippy toes, so his legs were bent
22:13
I feel much better. I feel energized. Feel like I'm hyped. I feel very happy
22:20
I was the first one to have it in the world, so it was very exciting for trying it out Considering everything he gone through he just goes on living life like he normal You could call it that I think he pretty courageous
22:36
Takes everything on, especially someone with, you'd think of his ability. Really proves everyone wrong
22:44
My mum and dad did everything they can to making me think about all the good things in my life
22:52
I'm just very sad that people can have so much fun without me playing sports that I can't do
23:00
And I just being on the sidelines, just watching them have fun
23:05
I just want to be stronger. You're the strongest person I know. I'm like, good at sports
23:12
You are good at sports. Like, I could play with my brother and I'd never get hurt
23:17
No, no. It's all right. Still do plenty of stuff, like doing sports, playing soccer
23:27
Running? Running, I do running. I got to stay cross country last year
23:32
I got a trophy for coming second. So I'm doing a lot of things
23:36
Are you worried about hurting yourself? No, I'm not. I'm not. I'm very strong and I don't care
23:43
I'm going to do whatever it takes. Hi. Hi, buddy. How are you
23:52
Good. Good to see you mate. Ready for physio? Yeah. Yeah, let's go get your shoes on
24:00
I actually first met Harrison about six years ago when he was at the Royal Children's
24:06
I was a nurse there. And then I've been his support care worker the last year
24:10
We hang out a couple of times a week. We just try to hang out and have fun. And also we go to physio, osteo
24:16
Today we're going to a physio class. The therapy Harrison receives every week
24:21
He'll get a massage with the osteo and then he has exercise class with me
24:26
just to keep his body flexible and moving. Do people ever say anything negative to you about your condition
24:33
Some people really stare at me in public. Most of the kids, even teenagers stare at me sometimes
24:41
A lot of adults do it. They don't just have a quick look, they fully stare
24:46
I just find it really rude. I get it, they're interested in, but talk to him
24:52
You don't have to just stare at him and make him feel uncomfortable. Why do you look weird? That's what most people say to me
24:58
Why does your hands look like this? Why do you have bandages on
25:03
Like all those. I keep telling them that I have a condition, but they won't listen
25:09
They don't understand what I'll go through. Yeah, it's confronting sometimes, but we just get on with it, don't we
25:17
Yeah. Yeah. If you see a disability, don't stare at them. Don't call them names
25:24
Just please don't do that. Be kind. Just be kind. How hard is it
25:29
How hard. How's your body feeling today? Good. Good? Are your feet okay
25:35
They're not too sore today? No. No. He's getting a lot stronger and he's had a bit of a few ups and downs the last kind of 12 months with pain
25:43
but he's been able to maintain his strength and his fitness and exercise capacity
25:49
which is something that we're starting to work on a little bit more now. It's about prescribing exercise specific to the condition
25:55
So for H, it's about keeping him mobile, keeping him strong, keeping him active for as long as possible
26:01
and having a bit of fun while we do it. So I just love playing soccer
26:06
That's my main sport. And I really hope that Christiana are in the old all season
26:12
How proud are you, Harrison? Don't cry. Super proud
26:24
He's an incredible person. After all he's been through. He still smiles and lights up a room
26:34
And I just wish everyone could just take a page out of his book
26:39
because he makes life look easy. and it's not for him. But you wouldn't know
26:48
Just love you. People love you. I just love helping people, taking care of people and all of that
27:00
What would you like to tell other kids who have severe conditions as well
27:04
Just please don't give up. We got this. I'm here for you
27:12
These are my pain medications. I usually take these three or four times a day on top of a pain patch that I wear seven days a week
27:22
Epidermolysis bullosa is a rare genetic skin condition. My body cannot create collagen, which is basically the glue that holds my layers of skin together
27:33
So I'm extremely fragile and delicate and I can have wounds up to 80% of my body
27:40
So the nurses that are here right now, one of them comes twice a week, the other comes three times a week
27:47
I have nurses and I have medical staff that come in and do a dressing change
27:51
Taking all the old bandages off and redressing all the wounds, which probably is the longest part of the whole process
27:59
On Monday, Wednesday, Friday it takes four hours and Tuesday, Thursday, Saturday, Sunday it takes an hour
28:07
Why is it so important to be changed so frequently? I'm extremely open to infections like sepsis, I'm prone to skin cancer
28:15
So if I don't look after my skin, my skin won't look after me
28:19
Currently there's no cure for EB and it is a progressive condition so I will get worse over time
28:25
and I've already seen the side effects of that. My wounds are a lot worse than they used to be
28:31
My hands have fused together, I have a total of four whole fingers left
28:36
I've lost all my toes. They have completely fused together. So about four years ago I stopped fully walking
28:44
I could be a lot worse but I could be a lot better. This scrapbook is dedicated to my beautiful little girl Claudia
28:57
It's a collection of all our happy memories. Your mom. I look spaced out now
29:06
You could see the tongue was swollen. Yeah, yeah, yeah, yeah. You were always happy
29:11
Yeah. Always smiling. That's the day we were taking you home and we had got the diagnosis, the full diagnosis, the same day
29:22
When we were given the diagnosis, we were shocked. EB can't be detected in the womb, so it only unfolded
29:30
When Claudia was born, that was our first experience of travelling with you
29:35
It was hard. So your dad is in the pool with you there and you're swimming with all your bandages on
29:39
And I stood at the bank and dad put you up like that and then I wrapped you in the towel
29:44
and I had to run from there through the foyer, the hotel, up into the room
29:48
and then stared your bandages then. It was hard for my parents. I know that. They really struggled
29:54
They're doing this for the first time. They don't know what they're doing
29:58
So they were just... doing what they could on instinct. It's like being in a different world where you have no answers and nobody really gave you the answers at the start
30:08
And you only found out how hard it was going to be as it was happening
30:14
From the day that Claudia was born our lives changed forever. I dissociate from these pictures because it doesn't feel like me
30:23
Like I look at that baby and it doesn't look like me
30:27
With the brown hair and good skin, it looks like a different child
30:31
I've always struggled with my looks, especially as I've gotten older. The expectations of a girl are so high and the standards you have to live up to
30:44
My condition goes against all of those things. For most of the time in secondary school, I was ignored. I was shunned
30:52
completely looked over. I've always struggled with friendships. Unfortunately I don't have friends anymore
31:01
You can't fix it as a parent. You can't make friends for your child
31:06
We watched her for six years suffer. The loneliness, the isolation. Oh
31:12
I'm the only person that understands myself and sometimes I couldn't explain to my parents
31:19
They can't say, I know how you feel, or I wish I could take it away for you
31:25
when you know that's never going to happen. So there's no point in even saying that to someone
31:31
But also, they have been always there for me, and I know I can go to them
31:36
So I'm very lucky to have the support system that I do, and I think that's how I got through most of it
31:42
I think it made her stronger. I admire that she's sitting here today
31:46
Is it like she has been to hell and back? and is still here, still fighting, physically and mentally
31:55
When I was becoming a pre-teen teenager, I was the generation that watched a lot of MUAs on YouTube
32:04
So I'm going to start with... Hi, Ruth. I think that kind of turned on a little spark for me
32:11
It's like, I'd love to create something like that that was something I could set my mind on
32:15
and have a goal to reach towards, which is what I've done
32:22
So I started content creation when I was about 13 because people had seen me for Deborah Island many times, my charity
32:32
I had been on TV a few times or in a newspaper article. I think once they saw that I was on my own social media
32:40
people liked to see that side of things of me, not just from a campaigning point of view
32:45
I've had lovely messages of people saying that I've helped them and other people with my condition have reached out and said that I really look up to you and it's lovely to hear
32:57
So I'm doing a full natural dram look. This is the look that makes me feel most pretty
33:06
Once I was getting into my last few months of school up, I kind of said to my mum and dad, I think there's this course I'd like to attend
33:13
and college was just teaching me the profession as a mother how you can become good in the industry I finished about a year ago and hope to be working very very soon What do you think of Claudie new look I love it She very talented To watch her
33:37
doing it is actually amazing to watch. It's like a pure artist at work. So I think she
33:45
She has the eye and the talent to go as far as she wants
33:49
Oh wow. I have many dreams and aspirations. I hope to maybe do fashion someday
33:58
I'd like to work with brands. Maybe make my own makeup line one day
34:03
But you know what, I'm just happy to be here right now
34:07
And whatever tomorrow brings, it brings. You'd have to live with Claudia and experience her life
34:13
be aware of the challenges that have been put in her way and she has overcome every single one
34:20
She put her head down, she's what she wants to do. She passed her grades, went to college, the future is on its way
34:27
My achievements have definitely boosted my self-confidence, realising that hey you can do great things no matter what the circumstances are
34:37
You have this disability but you have defied the odds in many ways
34:43
Have you been doing your daddy's makeup anytime soon? I have suggested that. She promised
34:47
I did suggest. Still hasn't done it yet. I want false eyelashes done yet
34:53
Growing up with ichthyosis, it has been difficult. My skin was worse when I was younger
35:00
It was drier. And it was hard because every time I was outside the house
35:06
people stared at me or whispered bad things. I've never been on a date before
35:11
I think that I've been very insecure about my skin. I have to be confident because otherwise I don't really know but it has made me strong
35:23
I don't wish to be someone else. So today I'm going for a blind date
35:30
My cousin is going to help me with my makeup and hair
35:34
So what are you going to wear tonight? I think I'm going to wear what I have on right now
35:40
Do you think it's good for a date? Yeah. I'm nervous. My expectations for the date
35:47
For me it's very, very important that the person is funny and it's easy to talk to because I like to talk to people
35:56
I'm ready for the date. Good luck. I don't think I have a type of woman
36:04
The most important for me is like the personality. If the personality is good, I'm falling in love
36:09
We see what happens. Hello. Hello. How are you? I'm good, and you
36:14
I'm good, thank you. What's your name? I'm Natalie. Natalie. What is yours
36:19
Your name? William. My name's William, yeah. Thank you so much. I like your shirt, by the way
36:25
Thank you. So, what's your favorite food? I really like, just like, really Swedish meatballs with lingers
36:35
I love sushi. I always eat, like, everything. I'm saying you're acting like this
36:39
Decide fish. You don't like fish? I hate fish. You like sushi, but you don't like fish
36:44
What is that I love sushi I don know I hate fish Like every kind of fish I hate Okay So can you tell me about your skin condition Yeah
36:55
I'm born with Ictiasis confetti. My skin is dry and it grows too fast
37:03
Okay. I'm red, obviously. And I have to like put cream on every day
37:10
What happens if you don't like, if you miss? I get really, really dry. You're really dry? Yeah
37:14
Does it like itching and stuff? Yeah, itchy and it like, you know, get pale or not pale, but you know
37:19
Yeah, you can peel off the skin and stuff. Yeah, exactly. Okay, yeah, yeah. So what do you like to do
37:24
Do you like have any hobbies or? Um, partying. Partying. Everybody loves to party
37:30
And do you have any hobbies that you like? Beside my job, I'm a photographer
37:35
Okay. I'm a videographer too, so you're a model, so. Yeah, it's fun
37:40
Nice, nice. Yeah, I'm a model too. Oh, you are? I've been modeling in Dubai
37:45
Oh, wow. Start on. I decided to post some pictures on a group of Facebook for models and photographers
37:53
And if anyone would be interested in taking pictures, that's a dream I've had for a long time
37:58
So we booked a photo shoot and then I posted them on my Instagram
38:04
And I got really positive feedback. And that's how it started. I get more confident being in front of the camera and being out there
38:13
because then it's because of my skin and I feel like I'm doing a positive thing
38:18
I think also that maybe I can help other people with their insecurities
38:24
I think it's going good Yeah, he's really nice I don't think he had a big deal with my skin condition
38:32
The first impression was maybe, oh, it was my skin but now he talks to me and that we have like a normal conversation and stuff
38:41
All right, you ready? All right, let's go. Very good time, yeah
38:45
It was really nice. Yeah. You're easy to talk to. Yeah, same to you
38:51
Do you think you're going to come out again? Maybe. Maybe. We can see. We follow each other on Instagram, so we'll probably catch up there
38:58
It was fun. Nice to meet her. She's a beautiful person. I like that she loves to do the same thing as me and I love her smile in her eyes
39:07
She's a person with just a different skin condition as me and that doesn't matter with me
39:13
He's a good person and he's funny to talk to and easy
39:17
It feels like we have almost the same humour and stuff so it feels nice
39:21
Has this dating experience taught you anything? It was really fun and it felt easier than I thought
39:28
It has taught me that just like do it. It's not as scary as I thought it would be
41:09
I always came to her. I said, I'm going to do it
41:13
Because it was my son since I was little. But my mom didn't leave it because I was so happy
41:19
What do you think about the tattooing? What do I think? When you're born with your body, you have to live with your body
41:25
I don't like it. I don't like it. I don't like it
41:29
I don't like it. But the doctor could do it. But she came here
41:34
Is it the first one? No
#Genetic Disorders
#Skin Conditions