THESE people live with some of the rarest allergies in the world. Their conditions have brought about some startling physical reactions, like Natasha who became allergic to her own hair growing, or Beth whose allergies have restricted her diet so much that she can now only eat two things. Their Allergies mean they have had to learn to live their lives differently to everyone else. But just because they live with such rare and unusual allergies - that doesn’t mean they’ve let that get in their way...
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00:00These people live with some of the rarest allergies in the world.
00:05I have an allergy to water.
00:07I'm allergic to myself.
00:08I'm allergic to my hair growing, so when it does start to grow,
00:11it blisters and it burns and it's absolute agony.
00:16Their rare conditions have caused some startling reactions.
00:20I've had 43 skin cancer surgeries.
00:23Since my very first anaphylactic reaction, I've used over 250 EpiPens.
00:27I literally had to run down the stairs because I could just hear you screaming.
00:31And forced them to live their lives differently.
00:34Why does that girl have a bag on her head?
00:36Every time I would wake up and I would see that it was raining, I had panic attacks.
00:40I live off of oats and baby formula to survive my allergies.
00:45But just because they live with these incredibly rare allergies
00:48doesn't mean they let that get in the way of them living their lives.
00:52People always ask me, well how does it work if you're a gymnast that's allergic to exercise?
00:57The sun's rays, so often a symbol of health and happiness.
01:02But for one young woman in this quiet town, they are nothing short of deadly.
01:07If UV rays touches my skin, I burn really bad and then I develop skin cancer.
01:16I've had 43 skin cancer surgeries.
01:19So my elective surgery was on Tuesday and they found a different type of squamous cell carcinoma
01:29where it grows really fast.
01:32And it was like about maybe that big.
01:38Well they numb it and then they slice it and then they stitched it up.
01:44Lizzie was born with a rare condition called xeroderma pigmentosum, or XP.
01:50Her skin is unable to repair its own DNA once it's been damaged by the sun's harmful UV rays.
01:57At home, all the windows have been lined with protective filters.
02:02But it's the outside that presents the biggest danger.
02:06OK, we're getting ready now. Every day she's got to put on this sunscreen.
02:10For Lizzie, leaving the house is a huge ordeal.
02:13Even the tiniest gap in her clothing could allow the UV rays through and prove catastrophic.
02:19Jeans are the best that have the tightest weave, and so she's got her jeans on.
02:26She likes those that she can text with, of course.
02:29And this meter shows the amount of ultraviolet rays.
02:34Of course, inside it's at zero, but outside it turns to like 1,600.
02:40Lizzie is supposed to be under 10.
02:43So she's got to be careful.
02:45She's got to be careful.
02:47Lizzie's mum had noticed the signs of XP years before they were able to get a diagnosis and give it a name.
02:54When she was six weeks old, about 30 minutes in the park, and we came home,
02:59the next morning her eyes were swollen shut, her face was red, and we rushed to the doctor.
03:08Unfortunately, XP is so rare that a lot of doctors don't know about it,
03:13and so he just thought, oh, well, I guess she just got a little too much sun.
03:18Which meant for years after, Lizzie and her family were completely unaware she had a potentially fatal disorder.
03:25She lived a very normal life, except for one thing.
03:32The sunburns that she would get would make her skin look pretty bad.
03:38She tops it all off with this hood.
03:44So she's covered head to toe and ready to go outside.
03:50Oh, Lizzie, you're going to have to come in.
03:55So she's covered head to toe and ready to go outside.
04:00Oh, don't forget your meter.
04:02It wasn't until Lizzie was 12 that a local doctor shed light on her condition.
04:07I found two sores on my face that would not go away.
04:11So I went to a dermatologist and they said, oh, that's cancer.
04:15Remarkably, the doctor happened to be one of the few XP experts in the world.
04:20I had actually seen a lot of cases of XP.
04:23So I, of course, thought of that first thing when I saw Lizzie,
04:27whereas I think someone who had not had that perspective probably wouldn't even have suspected it.
04:32The dangers of XP include the development of multiple skin cancers
04:38and other problems such as neurological problems and developmental problems.
04:44The diagnosis completely changed the way that Lizzie had to live her life.
04:49Do you have your meter, Lizzie?
04:51Yeah.
04:52OK.
04:53On a typical cloudy day, the meter runs about, hey, 300 to 400.
05:00But on a super sunny day, it runs 1,600.
05:07It goes on and off.
05:09Let me see that.
05:12So it's reading 400 right now.
05:15And now inside the hat, it's only in 10.
05:19What?
05:20Nine.
05:21So it does really help.
05:23So I feel actually pretty safe.
05:27In the very beginning, I felt sad and I said, please don't stare at me.
05:32I'm just a normal person.
05:35I felt kind of sad, upset.
05:38I still get remarks from people saying, why does that girl have a bag on her head?
05:46Are you a space mutant?
05:48Hey, are you a beekeeper?
05:49Are you from outer space?
05:51So I explain to them what it is because I want people to have a knowledge of XP.
05:58Lizzie is a real champion, I think, when it comes to her diagnosis with XP.
06:04She really is upbeat about it.
06:07I think I am positive because I have a great big family.
06:12I have five brothers, I have two sisters, 20 nieces and nephews.
06:19XP in the US affects one in one million people.
06:23What's rarer still is having two instances of it in the same family.
06:33My niece has XP.
06:36She's seven.
06:44When my daughter was first diagnosed with XP, she was just one year old.
06:50She had a really bad sunburn and we took her to a doctor who recognized it, thanks to my sister.
06:57Even with having XP in the family, we were still shocked.
07:02I'm really grateful for my sister Lizzie and the example she's been to my daughter.
07:08She's kind of a hero to her.
07:10And Lizzie's niece isn't her only fan.
07:17She is really outgoing and she just loves everyone that she meets.
07:23So I could pretty much walk up to anyone and they'll say,
07:26Oh, Lizzie, I want to be your friend.
07:29It was so fun to be around.
07:31She doesn't let her XP control her.
07:35She's just the funniest girl I've ever met.
07:37She just loves life.
07:40A message that I would like to share with people.
07:44Just know that you are here on Earth and just be happy, make new friends
07:51and have a positive attitude no matter what you deal with.
08:02Is that nice?
08:04Is that yummy?
08:08What do you want now?
08:10Raspberry.
08:12I've always wanted to be a mother.
08:14So when I did fall pregnant, it was just the most amazing thing.
08:21I really actually enjoyed being pregnant as well.
08:24Oh, good girl.
08:26Well done.
08:28The minute Willow was born, I know it's very cliche to say,
08:31but just the love that I felt for her was just like nothing I've ever felt in my life.
08:37Where's Willow's nose?
08:39Where's Willow's hair?
08:41Where's Willow's ears?
08:43It's just still mind blowing even now, even 18 months later.
08:50The condition I have is aquagenic utercaria, which is a bit of a mouthful.
08:54I couldn't say it for ages.
08:56Aquagenic utercaria is a rare condition where hives develop on the skin.
09:01Aquagenic utercaria is a rare condition where hives develop on the skin
09:06after it comes into contact with water.
09:10There are very few cases in the world.
09:13In medical literature, there's only about 30 cases worldwide.
09:18Up until I had my daughter, I had no issues with water at all.
09:23I had three baths a day.
09:25I was obsessed with baths, went swimming, did all of the normal things
09:29and then gave birth to my daughter and had a really, really traumatic birth.
09:33Literally, the first bath after I had Willow broke out in this awful rash.
09:42When I touch water, firstly, I will itch for a while.
09:48Physically, it's quite painful.
09:50It's very itchy. It's kind of like stinging nettles.
09:53It's just a prickly feeling and then it's just a full-blown rash.
09:56I'm mostly affected just above my belly button.
09:59It's mostly my stomach, my shoulders, my back.
10:02I sometimes, occasionally, will get it on my face as well
10:05if I'm having a particularly nasty reaction.
10:08But water isn't something that can be completely avoided.
10:11So Sherelle has had to learn how to live with the reactions it causes.
10:15A lot of people have said to me,
10:16how do you clean yourself? You must smell and all of these silly comments.
10:19I usually shower in the morning and the reason why I do that is because I get it sort of done.
10:25I can kind of have my breakfast then and distract myself whilst the reaction is happening.
10:30A lot of people who do have showers for 10-15 minutes,
10:33you're sort of just there enjoying the water.
10:35So for me, I don't have that time.
10:37I just have the time to clean really fast.
10:39I did a lot of swimming when I was pregnant
10:41and I always had this idea that I was going to take Willow swimming
10:44and that was just going to be a thing I was going to do.
10:46And I was even looking at all these mother and baby classes I was going to go to
10:50and then obviously when I developed this allergy and I couldn't, I was really upset.
10:56Here she is finally.
10:58Hello!
10:59Did you have a late night last night Mrs?
11:02Did you?
11:03So Lucy, she's really, really good with Willow.
11:06She's over like every day so it's really great for me
11:09because I have somebody who can do these kind of things with her.
11:12It's horrendous outside.
11:14It's flowing again.
11:15It's chucking it down with rain.
11:18Living in Wales, it's very rainy and you can't get away from it.
11:23Every time I would wake up and I would see that it was raining, I had panic attacks.
11:28I'll have to just run.
11:37Having friends who can step in and do water-based activities with her daughter
11:41doesn't stop the sting of being left out.
11:45Missing out on these things like bathing and going swimming
11:48does make me upset sometimes.
11:54If I did decide to go swimming with Willow, it could potentially be very dangerous for me
11:58because I could go into anaphylactic shock.
12:03That for me is a very scary thing, just not knowing.
12:24I think in time I just sort of realised that
12:28swimming is just something I can't do with Willow.
12:30There are plenty of other things that I can do with her.
12:42Having my friends to help me is a massive, massive help and I'm so grateful for it.
12:47We try and see each other as much as we can
12:49and Willow's always into her witch's lash because she's the cutest.
12:52It's just nice to have somebody that I can say,
12:55hey, can we go and do this and I've got that support there.
12:58I remember that one time where I lost my leg.
13:01I think without that, life would definitely be a lot harder for me.
13:06Hey everybody, welcome back to my channel.
13:08So in today's video, I think it's really important to talk about the condition I have
13:12because it's such a rare thing and for me, I feel like if we all get talked about
13:16Hey everybody, welcome back to my channel.
13:19I have a rare condition called Aquagenic Urticaria.
13:22Surprisingly, quite a few people followed me and we've been sharing stories
13:26and a lot of people message me on that page and they'll say,
13:29you know, this page is really great for me.
13:31And we just chat all the time about our reactions.
13:37It's weird having a rare condition.
13:39I never really thought I'd be the type of person to have a rare condition.
13:42It's weird having a rare condition.
13:44I never really thought I'd be the type of person to have one of these crazy things
13:48that you see on the TV or the news.
13:52Now I've kind of embraced it for what it is.
13:55I'm learning more about it every day and almost in a weird way now,
13:58I'm quite proud of being a little bit different.
14:02I know it's very cliche to say, but she is my world.
14:05And she's my very best friend and we have so much fun together.
14:08She's like my little mini me.
14:12You're what I always wanted, aren't you?
14:16Yeah.
14:17I think even with the allergy, the future is positive just because I have her.
14:24Seeing her smile every day just pulls all my heartstrings, don't you, Willow?
14:29She is literally the reason I live, which is very dramatic to say, but it's true.
14:39Give us your paw.
14:40Good boy.
14:41Other paw.
14:42Good boy.
14:44Good boy.
14:45Natasha has a rare disorder that has made her allergic to everything,
14:50including her own tears.
14:56But she didn't start out this way.
14:58The condition began with a simple food allergy.
15:02Good boy.
15:03Towards the end of 2012, I started getting allergy reactions to fruit.
15:07So when I ate an apple, my lips would blister a little bit and feel a bit itchy.
15:11First it was apples, then it was strawberries, then it was tomatoes.
15:15So I went to see my doctor and was sent to an allergist and they said it was oral allergy syndrome
15:20and to carry a nappy pen just in case because there's an ever so slight risk of a huge reaction.
15:24And then about six months after that, I was just out one day with friends at an event.
15:29I hadn't eaten anything new. I hadn't drunk anything new.
15:32And I suddenly felt really unwell.
15:34The next thing I know I'm being injected with things and they're putting like oxygen masks on my face
15:39and then I lost consciousness.
15:40And they told me I'd had a life-threatening anaphylactic reaction.
15:44They said it was probably a fluke thing. This sometimes happens.
15:47Don't worry about it too much. You've got epipens if you do, but it's unlikely it'll happen again.
15:51Since my very first anaphylactic reaction, I've used over 250 epipens.
15:55After years of suffering from continuous allergic reactions,
15:5922-year-old Natasha was finally diagnosed with Mast Cell Activation Syndrome.
16:05The cells in my body called mast cells are responsible for releasing things such as histamines.
16:10My body, the cells react inappropriately.
16:12So if there is an attack, it releases chemicals, but it releases too many.
16:17Or sometimes it releases chemicals when there's no trigger at all.
16:20So I have completely spontaneous reactions.
16:24Reactions can vary. They can be anything from just feeling under the weather.
16:28Itchy, very tired, or they can be life-threatening like tongue and throat swelling.
16:33I have pictures from reactions because I don't really remember them very well.
16:37So it helps piece things together for me.
16:40So this was my very first intensive care admission in 2014
16:45when I'd ended up being transferred to ICU for the first time.
16:49And it seems really strange looking at myself with hair now because I'm so used to not having hair.
16:55I'm allergic to my hair growing.
16:57So when it does start to grow, it blisters and it burns and it's absolute agony.
17:02So I'd rather just keep it short and have no hair and be pain-free than suffer for a little bit of hair.
17:10I just kind of have to make the bald girl look work, really. I don't have much choice.
17:15The Mast Activation Syndrome is an incredibly difficult condition to live with
17:19and it can be very hard to cope with.
17:21Pretty much anything can impact this condition and sometimes my body's okay with it
17:26and other times it has a complete meltdown over the slightest thing.
17:29I'm not able to do most things most 22-year-olds do.
17:32I can't drink alcohol. I can't even tolerate it on my skin.
17:35We tend to only cook things that she's safe with.
17:39We limit the food that my husband and I have.
17:42Obviously try and clean as much as possible to reduce the pollen in the house.
17:48I think mainly using antibacterial wipes and sprays, making sure all surfaces are cleaned down,
17:54especially with having the dogs as well.
17:57The acute nature of Natasha's condition has been a lot for her family to come to terms with.
18:02When Natasha's in hospital and she's had a severe reaction, it's very distressing to see her
18:10but I don't want her to see my distress or upset because I don't want her to feel worried about me.
18:16You want to walk away and not experience it but obviously you have to stay.
18:23It is distressing.
18:29Despite her daily battles with her allergies, this has not stopped Natasha from pursuing her passion for gymnastics.
18:36I've done gymnastics since the age of eight, just recreationally
18:40and when I developed this condition I wasn't able to keep up with mainstream gymnastics.
18:44Switching to disability allows me to compete and I can train at my own rate rather than pushing myself.
18:50I think what I admire most about Natasha is her positivity.
18:54I think it's her personality that gets her through everything because she's just a really bubbly personality and really positive.
19:01In the gym there are quite a lot of barriers because other girls wear aerosol body sprays and there's chalk and there can be dust around.
19:08When I exercise, because of the way the muscles affect my brain, I lose the feeling from my elbows down and my knees down
19:14so when I'm stood on the beam I can't feel where my feet are, I can only look at the beam to know where they are.
19:19But I'm quite persistent and I'm quite stubborn and I love gymnastics so much
19:24and I think because I have that passion that's what gets me through the tough days
19:28to then be able to go out and compete and show people that disabled people can actually do things.
19:38I admire her determination and her ability to laugh about everything, no matter how serious it is.
19:48You don't know where she gets her strength from but I think she likes to inspire people if she can
19:55to say to them, you can achieve things if you try.
20:00These are the British medals and then when I get a gold I also get a trophy.
20:05That's the UK number one trophy which I've won for the last three years
20:10and this is my Pride of Sport trophy. In 2015 I was named the Disabled Sportsperson of the Year
20:16which just feels amazing to be recognised as a disabled athlete nationally, not just locally.
20:26I've always supported Tasha doing her gymnastics because it's something she's always loved and been passionate about.
20:31People always ask me how does it work if you're a gymnast that's allergic to exercise
20:35and I think that's the point, it doesn't really work which is why it's so difficult to train and work around it
20:40and it's a huge barrier but with the support of my friends, family and coaches we work through it as best as we can.
20:47I'm never going to be the world's greatest gymnast but as long as I enjoy it and I can keep doing what I'm doing then I'm happy.
21:03How's my skin looking?
21:05Better.
21:06Yeah?
21:07Yeah.
21:08Can I get some pictures?
21:09Yeah.
21:11That way.
21:12So I'm checking Beth's skin for anything that's actively weeping, making sure nothing's open and actively bleeding as well.
21:19I'm allergic to pretty much everything that comes into contact with me.
21:23I can come up in hives from something simple or I could come up in hives just from something that I've never had a reaction before.
21:30Doctors have never seen anything like my conditions before.
21:32They call me a medical mystery.
21:36When the flare-ups happen there's not really much I can do to treat it.
21:39Unfortunately I've tried so many different things and nothing really helps.
21:43For Beth, her allergies didn't make themselves known until she was in her mid-teens.
21:48I woke up one morning when I was 15 years old with a slight rash on my face and from there it never went away and it kept coming back.
21:55My own emotions, getting too stressed can cause me to have reactions.
22:00Products, my body can decide one day it doesn't want to use the same shower gel I've been using for years.
22:06I also react a lot to foods and that's one of my biggest things that affect me.
22:10I have massive allergic reactions that can lead to anaphylaxis.
22:14Okay.
22:17I pretty much eat the same thing every day.
22:20Bake and roll?
22:21Yeah.
22:22I'll do bake and roll.
22:23Yeah.
22:25The most severe food that I react to is chilli and paprika.
22:29It could just be from the smell of walking past a restaurant.
22:32It can also be in foods that I've cooked in my own home which can be more life-threatening because I have no escape.
22:37If you were to fry onions around me, fry mushrooms, if you do something that creates a very strong smell in the atmosphere that triggers me.
22:47I was a bit shocked at first, like I didn't understand how all of this could be an allergy and the way it reacts to her.
22:55When I first started dating Sasha, I kind of expected to just go a separate way because she didn't want to manage it.
23:01I knew my health would affect the relationship massively because it changes her life as well as mine.
23:06I don't even think it was a big sacrifice to get rid of all of the foods that Beth couldn't be around.
23:12I reassured her like, I'll help you through this, I want to be by your side and I'm not going to leave just because of your health.
23:20Since being with Beth, Sasha has become her full-time carer, helping her with everything she does from morning until night.
23:28She has to help me prepare food because I will be so scared that that food is coming to cross-contamination with something and could affect me, send me into anaphylaxis.
23:36I have EpiPens in every room of the house. Sasha usually knows where they are.
23:40She does everything and as much as I will try and help her out, she refuses to let me help do some stuff because if I push myself, she knows that will lead to a flare-up.
23:48This was the worst it had ever been. I was screaming, I couldn't control myself.
23:55Yeah, I remember I literally had to run down the stairs because I could just hear you screaming and then when I walked in, the redness was like spread all over her cheeks and it was just excruciating pain.
24:09Put your mind somewhere else. I know it's hurting but just try.
24:13I think the only way I can describe it is like having acid running in your face. It burns all the time, it's burning right now. When it is at its worst, I can barely get out of bed.
24:23It breaks my heart because she's in so much pain and there is literally nothing I can do other than hold her hand and reassure her that once the pain stops, that's the start of the healing process.
24:34Making such a big commitment to Beth, Sasha's mum wasn't always supportive of their relationship.
24:40How are you? I'm okay. You know the drill.
24:44Having people come into my house just free will doesn't happen because if they walk in with a really strong perfume or a scent on them from previous food they've eaten, that could even trigger an anaphylaxis just from that.
24:57So when they come in, I will usually ask them to sanitise the stuff they've got, check their bag, sanitise their hands.
25:04Okay. Thank you. Thank you. Do you want a cup of coffee? I'd love a coffee, thank you.
25:10When I first started dating Sasha, Sasha told me her mum had doubts. She didn't want her to be isolated, she didn't want her to miss out on much. I completely understood that.
25:19I remember when you first brought up all of the concerns and how you thought and perceived Beth's life. I was very defensive and I took the protective side.
25:29To be honest, I was resentful with you at first because I thought I didn't get to see Sasha. I really did feel at the very beginning that Sasha was taking on too much.
25:43Yeah, I definitely do have that guilt and that's always in the back of my mind that I feel like I've made Sasha miss out on so much of her life.
25:51I still think to this day that she does too much for me. She does. But I wouldn't be where I am right now without her because I would be so lost.
26:01I don't see why you should feel guilty because I know eventually all the stuff that, yeah, I might have missed out on. We'll eventually do that in our own time and being able to spend it with you is just better than being on my own.
26:17Seeing what you go through and knowing you for so long now, it's now Sasha's happy and as long as Sasha's happy, I'm happy.
26:27They may be like chalk and cheese, but they work. So I'm just glad that they found each other.
26:41Preparing to go out has become difficult for Beth due to the nature of her allergies.
26:47EpiPen bag. When I leave the house, I have to set a lot of precautions. I will never really go somewhere I don't know without planning it first.
26:55In this bag is my emergency bag, what we call it. It's got my EpiPens in, my nose spray and my eye drops.
27:01I then have a spare t-shirt just because my body can go through extreme temperature change and at one point I could be sweating so much I could pass out, so I'll need to change clothes.
27:10I just always have to be on edge when we're out. I have to have eyes in the back of my head almost to make sure the people around us aren't eating.
27:18And if they are eating, that it's safe food that Beth can be near. If not, I have to make sure that we can move somewhere safe.
27:26Is it okay? Yeah, a slight smell, but it should be okay. Just shallow breathe.
27:34Sasha's love and support means everything to me. It does. She completely changed my life. She completely changed the way I saw my health and I saw my skin.
27:44She made me feel beautiful and I wouldn't have even posted my first TikTok about my page if it wasn't for her.
27:50I realised this is actually what I want to do and this is where I want to go.
27:54I'm so restricted with my life, but turning to social media and being able to get to know people through that way, it made me so much happier and I've made friends for life now.
28:03And I hope one day that I'll be able to meet them properly.
28:06What I love the most about Beth is how strong she really is. The way she fights through every day is inspiring.
28:16I hope that people learn and take away from my story that you're perfect being perfect the way you are.
28:21Don't shy away. I want people to know that it's okay to be different and it's okay to be unique.
28:27This is my life now. I wouldn't change it for the world because I wouldn't have met Sasha.
28:31I wouldn't be doing the things I am now. I didn't think that I would ever be somewhere, but I felt confident going out with my skin flared.
28:38I'm extremely proud. I didn't think I'd be where I am now.
28:43Hi everybody. We are making a brand new recipe with oats and hypoallergenic formula.
28:48In order to survive her rare allergy, Caroline has had to learn to live off a restricted diet of just two ingredients.
28:57I live off of oats and baby formula to survive my allergies.
29:02All right, so I got my medications for the day, which is a pretty intense cocktail.
29:11I'm Caroline. I live off of hypoallergenic formula and oats in order to avoid allergic reactions.
29:17These are mast cell stabilizers. MCAS is mast cell activation syndrome.
29:22It is basically an allergic disease in which the patient can have serious allergic reactions to a whole host of things.
29:30For me, my biggest triggers are food, pets, and pollen.
29:35This one keeps my airways open. All of that good stuff.
29:40I've had severe food allergies since the ripe age of two years old.
29:45At the time, I wasn't allergic to anything. All of a sudden I went into anaphylaxis.
29:49My parents rushed me to the hospital. And then I didn't have any more allergic reactions until I was 18 years old.
29:55I ate ice cream that was cross-contaminated with nuts.
29:58And all of a sudden I went into anaphylaxis. And instead of my body just recovering, I kept on going into anaphylaxis.
30:04So I was having allergic reactions to all these safe foods that I was eating for years and years and years.
30:09And my list of safe foods kept on getting smaller and smaller and smaller until I was literally just down to oats.
30:15So one of the doctors came up with the idea of trying hypoallergenic baby formula.
30:19So that's been about five years now.
30:23Hi everybody. We're making scrambled oats.
30:26It's kind of amazing how much you can make with just two foods.
30:29I used to get so bored of just eating these two foods.
30:32I would literally just heat the oats up with boiled water and then I'd add a bit of formula.
30:37But ever since posting about it on TikTok, you guys have come up with so many good recipes.
30:42This is so good.
30:43I first started posting on social media about my condition a couple months ago.
30:48It seems like I've ended up raising awareness for mast cell activation syndrome, which is really cool.
30:52Because I didn't even know what it was when I was first diagnosed with it.
30:56Morning honey.
30:57Hi mommy.
30:58My mom is the most supportive and loving person I've ever known.
31:03That looks pretty good.
31:04Yeah, I think so too.
31:06These kind of smell like eggs.
31:08The very scariest moment that we had was when you were hospitalized and you then went into anaphylaxis
31:16right in front of all the doctors right there.
31:19And she was in ICU for several days.
31:21That was literally terrifying.
31:24But it's improved a ton, obviously.
31:30It's nice that she can now make things that are similar to ours.
31:34So many things in life are based around meals and dinners with family and holidays and things like that.
31:40Everybody is really willing to make it work.
31:46I have different dinnerware than my family because this helps keep my food separate
31:51and there's no risk for cross-contamination.
31:53It's cuter than yours, so.
31:55I agree.
31:56Because of the incredibly rare nature of her allergies, people have struggled to believe it
32:01and have often turned nasty online.
32:04I've seen multiple comments on my TikTok of people accusing me of faking my illness.
32:09Somebody said,
32:20The hypoallergenic formula has everything I need to survive.
32:22In order to hit my daily intake amounts, calories, nutrients, vitamins,
32:28I try to eat five cans a week.
32:30The girl's gotta eat.
32:33There are a lot of holistic practices that have helped people with mast cell activation find relief.
32:39It helps tune in to my body and helps me understand that everything that I feel
32:45doesn't mean it's a symptom.
32:51Anytime I leave the house, I take several precautions to make sure I keep my symptoms at bay
32:56and I don't flare up my immune issues.
32:59Got my emergency meds, my EpiPens.
33:05I never, ever, ever go into somebody's house or apartment or car
33:09if they have a pet dog or cat or if they eat my severe allergens
33:14because just breathing in those allergens can ruin the next several weeks for me.
33:19You could argue that it would be a better, safer move for me to literally just never leave the house,
33:25but I don't think that is conducive to a high quality of life.
33:29So I do choose to go outside every day because I feel like it helps desensitize my mast cells
33:36to pollen and other allergens.
33:38I feel really safe when you're by my side.
33:41Like, I would consider you my emotional support human.
33:45I'm honored.
33:47I'm so proud of Caroline, the way that she's handled all of the last several years,
33:52her determination to be happy and stay happy.
33:56We've been walking for a bit. How are you feeling?
33:59I'm pretty tired. I'm pretty brain fogged.
34:01Want to take a little break?
34:02Yeah, that'd be good.
34:03But mast cell activation syndrome isn't the only condition Caroline has to live with.
34:08Dysautonomia is an autonomic immune system issue.
34:13What that means for me is I have a ton of nerve damage.
34:16If I stand up or walk for more than about 20 minutes,
34:20I'll start to experience a lot of dizziness, lightheadedness.
34:23There's no way we can really prove that the mast cell activation caused the dysautonomia,
34:28but I got sick with mast cell activation syndrome in September of 2017,
34:33and then I got diagnosed with dysautonomia in August of 2018.
34:38When I was really sick with dysautonomia, I was actually in a wheelchair for a while.
34:42So it's a miracle that I'm able to go on a walk down the street with my mom.
34:50Hello!
34:51Hi!
34:52Woo!
34:57Socializing looks very different for me.
34:59I try to get creative and think of other things I can do that don't revolve around food.
35:05So that might be going to an art museum, or going on a walk, or having my friends over for a paint night.
35:13So when we first met Caroline, it was before I would say her most recent really major reaction.
35:21It was our sophomore year, middle of the year in college,
35:25and at that time we were able to all sit together at the dining hall.
35:30My friends are incredibly supportive, and I really thank my lucky stars every day for them
35:36because every single friend that I've had before I got sick, they're still my friends now.
35:42Did you guys have lunch yet?
35:44No, not yet.
35:45Okay, amazing, because I have an idea.
35:47I was thinking we could have lunch together.
35:50Okay!
35:51Close your eyes.
35:56Chefing up.
35:58Alright.
36:02And open.
36:04Whoa!
36:06And formula ice cream.
36:07Okay.
36:09Dig in!
36:13It's actually, like, pretty good.
36:17Yay!
36:19You're not just saying that to be nice.
36:21No, like, I'm actually surprised.
36:25When people see my story, I hope that they are inspired to a degree
36:31to be grateful for what they do have, and be grateful for all the things that their body does correctly.
36:38I've had some tough moments and low points with this disease,
36:42but overall I'm so proud of myself for the way that I've come out on top of it,
36:47and I hope that it maybe inspires others to stay strong, keep pushing through,
36:53finding the silver linings, finding the good stuff in life.
37:08For more information, visit www.FEMA.gov