y you can't put this in your mouth and chew it? >> no. >> why not? i don't know why. there's no answers right now. none. tonight on "20/20" -- my strange affliction. a bizarre medical mystery, so repulsed by most foods, she survives almost entirely on french fries. >> some foods just look inedible to you. >> our cameras there for a full-blown panic attack, from trying to eat just a few grains of rice. food fright. and, allergic to noise? >> oh, my god. >> every day sounds multiplied 100 times over. a cat becomes a lion. a faucet becomes niagra falls. do some of them think you're crazy? quiet, please.

plus, identical twins, so, how could they look so different? >> she's normal height. i'm not normal height. >> the only ones like them in the world. >> she'll walk in the house, dwarf in the house! >> growing pains. and what would cause these healthy young men to go blind? >> it's hard to take in at 19. >> how doctors and parents finally figured out my strange affliction. >> that was the moment. it was like, a-ha. >> here now, elizabeth vargas and david muir. >> good evening. tonight, bizarre medical mysteries that stumped even the experts at first. that made people with these strange afflictions wonder if they were going crazy. that is, until the doctors said they weren't. >> and we start here tonight, elizabeth, with one of the strangest afflictions. a newly diagnosed condition that givens a whole new meaning to the term picky eater. deborah roberts is there with our cameras as you watch a near breakdown take place over the tiniest bite of food.

>> i'm trying to get it to calm down. >> reporter: you're witnessing a grown woman in the midst of a panic attack -- over rice. >> i don't know. >> reporter: take your time. this is really tough for you, isn't it? >> take your time on it. >> okay, deep breath. >> reporter: you look tormented. believe it or not, she's never, ever eaten rice. >> large order of fries. >> reporter: that's because for most of her life, amber scott has existed mainly on one food -- french fries. greasy, salty, one of our most guilty culinary pleasures. though she'll try pizza and bland pasta from time to time, the french fry is about the only thing amber can tolerate. >> i consider myself a french fry connoisseur. this is how i like them to look. >> reporter: if it sounds outrageous to you, amber isn't

at all shocked. she knows her eating habits are bizarre, but can't seem to change them. so how does a divorced mom of a 11-year-old get to this point? her daughter has a fairly normal diet. amber traces it all back to her childhood, sitting at the dinner table facing a plate of peas. >> and i remember thinking, "i can't do this. i can't do this." >> reporter: not that you won't. >> not that i won't. it was almost like a moment of paralysis. it suddenly was not something that was edible to me. >> reporter: she might have gone to bed hungry had her mom not caved and let her eat the only thing she could stomach. you guessed it -- french fries. >> i just had to make french fries three times a day, and she had to eat. if she didn't eat the french fries, she wouldn't eat. >> reporter: today, dinnertime hasn't changed much for amber. on any given day her meal is a plate of fries. anytime, anywhere. >> i have pepsi, diet. >> reporter: and only one kind of fry, mind you. >> can you make the fries

without the peel on them? >> reporter: they have to be skinless, hand cut, fried in canola oil. >> there's something green on that one as well. >> reporter: and with nothing more than a hint of salt. amber drinks just about anything. milk, soda, red wine. but when it comes to food, proteins, fruits and vegetables are out of the question. fish? chicken? >> no. none of those ever in my whole life. >> reporter: vegetables. >> never had a vegetable. yeah, i need an order of fries, please. >> reporter: it may sound like amber's living a junk food addicts dream, but in reality, she says, it's a living nightmare. did people think you were strange, not being able to eat the normal things that people eat? >> "you can't put this in your mouth and chew it?" no. "well, why not?" i don't know why. there's no answers right now. none. >> reporter: and believe it or not, amber is far from alone. by some estimates, there are thousands of adult picky eaters. people who are tormented by the

very thing so many of us find pleasurable -- food. it's a rare eating disorder called avoidant restrictive food intake disorder, or arfid. doctors like david katz of yale university's prevention research center are only now beginning to understand arfid. >> it's an expression of some extreme sensitivity, at the very least, but may really be almost like a phobia. >> what keeps you from eating a stick? what is it about looking at a stick that says, "nope, i can't eat that?" what is it? >> reporter: so, some foods just look inedible to you? >> that's the closest i can get to explaining how it feels. >> reporter: it's off-putting for them to even go in a grocery store. >> well, because it's traumatizing. >> reporter: nutritional therapist sondra kronberg has spent years trying to get tortured eaters like amber to accept different foods. now amber says, to look at something like strawberries or blueberries -- >> oh, i would think those would be a little bit more dangerous, because they look sort of like

bugs or animals or some kind -- >> reporter: bugs or animals? but they're blackberrys. >> i have a client who looks at raisins and thinks that they're ants. with mushrooms, people think it's fungus, it's mold. "i don't want to eat it." >> reporter: it's an affliction that can wreak havoc on your love life. >> it would take a long time for me to even build up the nerve to go out with anyone because i thought once they find out they're not going to want to see me again. >> reporter: so, it was painful. >> sure. >> reporter: amber's former boyfriend, jim neil, will never forget their first dinner date. >> it was pretty much disastrous. >> reporter: disastrous? >> yeah. >> reporter: in what way? >> well, i came to find out that she really could not physically eat anything that was on the menu. >> reporter: could not. not would not. >> could not, right. the food was actually repulsive to her. >> reporter: amber says that while she wants to get better, she simply can't. but why can't you, amber? why can't you just decide and, sort of like any other phobia

that people have, just confront this thing and psychologically work your way to do it? >> i think it goes deeper than that. when you can feel every shard of carrot in your mouth, and you can't get it to go away, that's not psychological anymore, i can feel that. hey, i'm coming up the ramp. i'll be there in a minute. >> reporter: so what happens when she finally agrees to step out of her food comfort zone and try something new? at first, amber refused our request, unless she had the support of jim, still a close friend. >> are you nervous? are you scared? >> i'm okay. >> i came to understand that, yeah, this is something very serious. this is not just, you know, a whim of hers, at all. >> reporter: finally, amber agrees to try something she's never attempted before -- white rice. >> rice is not very threatening color-wise. so, what is it going to do? i don't know. >> reporter: what happens next

is shocking. even before the rice is served, amber is beginning to sweat. take your time. when she dissovles into tears, we tell her she can stop. >> just give it a shot. >> that is a lot. >> yeah, try just a few. >> i don't want to get sick. >> reporter: seven agonizing minutes later, amber works up the nerve to consider a few grains of rice. >> okay, deep breath. >> deep breath. >> reporter: you can do it. >> be brave. >> i just don't want to get sick on you guys. >> reporter: no, you won't, you won't get sick. her panic barely contained. you okay?

amber struggles to hold back her gag reflex. you did it. you okay? not going to get sick are you? >> it won't go down. >> okay, okay. >> reporter: it won't go down? >> relax with it. >> reporter: good for you. >> there you go. >> reporter: you tried it. after enduring our experiment, amber declares she won't be trying a new food any time soon. how is it you can go through life only eating carbs and no vegetable and no protein? are you healthy? >> i'm very healthy. i've had test after test done, and i'm very healthy, there is nothing wrong with me. >> reporter: amber gaveus permission to check with her doctor, who told us the results of her last physical were normal. but her eating habits have prompted scorn and anger from others who see her simply as stubborn. >> i've heard it all, i mean,

i've heard -- i'm going to have a heart attack any day now. i've heard i wouldn't make it to age 40. and i started to accept that, like, i'm probably not going to, you know, live to be an older age like most people get to. hey heather -- >> reporter: a few years ago amber stumbled upon a website for adult picky eaters. >> yeah, can i get a cheddar bagel? >> reporter: there's bob stredney, whose diet also consists mostly of white, bland carbs. his only protein? bacon. if it's crispy. he and amber have bonded over their eating experiences. >> for 28 years i was made to believe i made this up. for someone else to have it, i was like, are you sure? >> reporter: the realization she is not alone was life-changing.

she's in law school and is even recording a podcast. >> it's a very old fashioned kind of mentality to tell your children you'll eat what i made or you'll starve. >> reporter: -- to help others make sense of a disorder very few of us understand. >> now i know that i didn't do something to myself and that is a big first step. it gives you hope. >> we're so happy for amber she's found some peace with her condition. are you an extreme picky eater yourself or do you have a phobia about certain foods? let us know on twitter with #abc2020. elizabeth and i will be right back. next, just leaving her apartment feels like it could shatter her eardrums. >> i was delirious with pain. >> every day sounds, from common squeaks to her children, magnified 100 times. >> we can't scream near him. >> allergic to sound? >> do some of them think you're crazy?

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during my years at "20/20," i have never had to conduct an interview like this. first, taking off my shoes, then all my jewelry, and then going into a room that was completely padded. why? well, just take a look, and especially a listen. for joyce cohen, a leisurely stroll down a new york city street is a landmine filled, anxiety ridden trek. even wearing industrial grade ear protection she calls earmuffs, joyce is on high alert for sirens and squealing kids, high heels and honks, manhole covers and motorcycles. do you go everywhere in these earmuffs? i mean, do you ever go out without them? >> almost never. it's too hazardous. >> reporter: even with sounds muffled, a doorman hailing a taxi sends joyce reeling. [ whistling ] >> oh, my god.

>> reporter: joyce's strange affliction is an auditory condition called hyperacusis. for her, everyday noises are agonizingly loud and cause horrific pain. you once wrote that, it feels like your ears were being filled with burning acid. that sounds pretty awful. >> i felt as though my entire head was being crushed. >> reporter: to limit noise during our interview, we took precautions. a carpeted hotel room. mats to absorb sound. phones silenced and equipment secured. despite that, joyce and her husband ben encountered a squeaky door we hadn't even noticed. and believe it or not, they carry their own wd40 just for such situations. to meet them, i removed my bracelets which could jangle, and my shoes which could click. joyce and ben both suffer from a severe form of hyperacusis. so, how did two people with such a rare condition find each other?

they first bonded on an online support group. it is okay for me to talk this loud? >> yes, uh-huh. >> reporter: joyce, a writer, says her symptoms developed six years ago after prolonged exposure to a loud ventilation system. >> i felt a wave of pressure descend upon my head, and i knew something terrible had happened, but they didn't know what. i was just delirious with pain. >> reporter: ben, a former banking consultant, says decades of going to loud concerts set the stage for his condition -- but the final trigger was a loud, squeaky printer at his office. >> one day, i woke up and everything was a hundred times louder. >> reporter: can you describe what the pain feels like? >> like somebody lathe match and threw it into my ear. >> reporter: their threshold for sound is now incredibly low. imagine the sound of a cat's meow, like a lion's roar. running water, niagara falls.

a bird chirping? think "the birds." >> my example was, you know the horror movie where the bad guy calls and the call is coming from inside the house? >> we traced the call. it's coming from inside the house. you hear me? it's coming from inside the house! >> it's like you have your own little horror movie inside your head. >> reporter: inside their apartment, they've created their own fortress of solitude. >> this is what the window is like. >> reporter: the windows are soundproofed and covered with acoustical quilt. the door buzzer has been muffled. joyce has croqueted dividers to prevent clanging plates. even the sound of ben's voice puts joyce on edge, so she shushes him constantly. >> say, very quickly. >> reporter: back at our interview, safely inside, 29 floors up, the distant sound of a siren is cause for alarm.

>> reporter: if it's getting close, you can just put your headphones on -- >> it's done. >> it's done? okay. >> reporter: so, why live in new york city where sirens are a 24-hour -- >> no place is safe. in the suburbs, there are lawnmowers, there are leaf blowers, there are barking dogs, there's cicadas. >> reporter: and everywhere, there are children. 600 miles away, eric, a suburban dad in north carolina, knows what joyce and ben are going through. hyperacusis made the sounds he loves the most, the high pitched voices of his sons, unbearable. >> we can't scream near him or shout very loudly at him. >> after they say something loud, they'll apologize to me. but i mean, they're kids. what are they going to do? they're going to be kids. >> we felt sad for daddy. >> reporter: eric, a financial analyst, says his hyperacusis began after mowing the lawn while listening to loud music.

>> as soon as i cut off the lawnmower, i knew something was wrong. >> reporter: he now wears ear protection to ward off the sounds of playing and for praying, but forget hearing the church choir. for eric, silence is next to godliness. hyperacusis, especially with pain, remains a medical mystery. like another puzzling auditory condition we've covered, misophonia, a hatred of certain sounds. for that story, i spoke to kelly ripa. she suffers from a mild form. >> if my husband eats a peach, i have to leave the room. >> reporter: you have to leave the room. >> i have to leave the room. >> reporter: this teenager has such a severe case, she couldn't talk to her own mother. can you give me a list now of all the things that your mom can't do around you? >> eat, chew, breathe heavily. >> reporter: it was amazing how many people in her life thought

she was just kooky. that this was a psychological disorder. >> a lot of people think that about this condition, too, and that you have noise phobia. >> reporter: or that you're a hypochondriac, or hyper-sensitive? >> yeah. that it's an emotional problem. it's not an emotional problem. >> reporter: what do your friends and family think of this? do some of them think you're crazy? >> yes. >> well, nobody understands. >> reporter: not even some doctors. >> one of the pieces of advice was to go for psychological counseling and stress reduction techniques were suggested. which is, of course, absurd. >> reporter: well, they clearly think it's all in your head. >> yes. >> yeah, they do. >> reporter: in this is pretty quiet, right? harvard professor charles liberman is a leading expert in auditory neuroscience at massachusetts eye and ear infirmary. he says hyperacusis with pain is real. >> there are clearly many, many people who suffer from this. and their descriptions are all remarkably similar. >> reporter: he says hyperacusis is still a mystery, but might stem from a malfunction of pain fibers in the ear.

he says numbers of people who suffer from it are on the rise. >> we're living in a noisier and noisier world. >> so, that starts to hurt. >> reporte and the odds of it happening are starting to go up. >> reporter: ben wishes he had worn ear protection in his concert going days. now, he cannot wear ear muffs, the pressure hurts his ears. utterly defenseless to noise, except for our interview and doctor's appointments, he now never leaves his apartment. but there's no real escape. >> i've got to leave for siren. >> reporter: the sound of a siren outside sends him into an inner room. >> the silver lining is right here, though. >> reporter: for joyce and ben, their saving grace has been finding each other. although nothing about their romance has been typical. >> we had a tiny wedding in a quiet, carpeted room. there was no music. and we had paper plates. we never raise our voices to each other.

>> we're very lucky to have found each other. >> reporter: their life together is a daily quest for silence, more research, and perhaps one day, a cure. what do each of you miss the most? >> walking down the street and talking to someone. >> we go to our neighbor's rooftop, and see the manhattan skyline. it's just so incredible. i miss being able to do that. next -- twins who share everything, except their size. >> when she was younger, actually, they didn't know she was going to stop growing. they didn't really know she was a dwarf. >> from tiny to teenage. cars, cheerleading and boyfriends. when we return. [ male announcer ] the wright brothers started in a garage. amazon started in a garage. ♪ the ramones started in a garage. some of the most innovative things in the world

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>> reporter: when you're 14 going on 15, just tiptoeing from the land of toys to boys, is a tall order made taller still when you're a primordial dwarf? what does that mean to be a primordial dwarf? what is that? >> it's this thing where it makes you short. she's normal height, i'm not normal height. >> reporter: right. >> well, what's, what else does it mean? are you going to stay that tall forever? >> yes. >> reporter: so this right here will be your height. >> about. >> uh-huh. pretty much. >> reporter: interesting. at four feet tall and 50 pounds, sienna bernal -- or sinny, as her family calls her -- is one of only a few hundred people in the world with a genetic condition known as primordial

dwarfism, where a person's body, from head to those toes, is in most cases proportional. just extremely small. the only thing smaller -- are the odds. she would be born with a twin sister, sierra. how many, how many little people are there? where? one of the twins is normal and one is a primordial dwarf? >> well, there's none that are twins. >> reporter: you're the only ones? >> uh-huh. >> reporter: at birth, sinny weighed just over a pound and was nearly six weeks behind her sister sierra in development. >> her lungs were not fully developed and she couldn't eat food yet, because everything wasn't developed and her skin was also really, really thin, so, we couldn't touch her. >> reporter: the twin's mom, chrissy. in the early going, what did they say about her chances? >> well, you know, the doctor said 10% chance of living. and if she did live, they thought she'd be a vegetable. >> this is elvis. say hi, elvis! >> hi! >> i like to sing. >> reporter: well, let's just say the good doctors underestimated sinny's spirit. >> and i like to dance. >> reporter: not that she

doesn't have health problems. the bones in her ears, for instance, are so small she needs hearing aids. but from the very beginning -- you were a fighter even when you were a tiny, tiny baby. >> uh-huh. >> yeah, we were born six weeks early. >> reporter: six weeks early. >> no wonder i'm so short. >> reporter: through the years, the twins were growing up but sinny just wasn't growing. and sierra was literally becoming the big sister. a role she clearly still loves. >> okay. >> slow your roll, man. >> reporter: when we first met the begin twins, they were 11. three years later -- sierra is now nearly double her identical twin's size. >> when she was younger, actually, they didn't know she was going stop growing, because they didn't really know she was a dwarf until she was older. >> reporter: remarkably, the true cause of sinny's size remained undiagnosed for years. chrissy and the twin's adoptive father, joey, say doctors didn't even suggest primordial dwarfism until sinny was 6. proportionally, she was growing.

>> right, she was growing appropriately. >> reporter: arms, legs -- >> just, you know, honey, i shrunk the kids. >> reporter: you guys have an amazingly honest sort of approach to things. >> well -- >> it's the only way to be. >> life is the way it is. you either choose to deal with it or -- >> reporter: well, apparently both sinny and sierra have picked up on that. >> you could fit in my locker, couldn't you? >> yeah. >> reporter: because they speak very candid about everything. >> oh, she'll walk in the house, "dwarf in the house!" >> there's no other way to treat it. if this is the roughest here at home, she'll be able to handle the world. >> reporter: and handle it she has. the last time we saw them -- >> i'm going to throw out a word now and i'd just like to have you react to it. boys? >> reporter: sinny seemed to be holding her own. >> that's you. once up had four crushes at a time and i didn't even have one. >> reporter: well, we found

things really haven't changed. at least in the boyfriend department. >> she's had one before i do. i don't care though. >> i had three. >> reporter: but sinny is the first to tell you, the transition from dwarf tween to dwarf teen hasn't been without growing pains. >> like, man, it sucks. you know, the world's not built for me. >> reporter: sinny has had to watch her sister start driving lessons -- from the back seat -- still buckled into a booster chair. and though they once shared the dream of a singing career -- it is sierra who is now on stage, writing and performing her own music. >> sienna started acting out really bad. i was like, why are you so angry all the time? and she said, because sierra is living my dream. >> what we did, after that particular day, was really try and figure out things that she could do. >> reporter: like joining a

special needs cheering squad. >> down and jump. down and jump. >> reporter: and finding new hobbies, like cooking. still -- sinny's hearing and vision have worsened since ore first interview. and she's developed scoliosis and battles some learning disabilities. >> i'm in a lot of pain. but i'm worth it. >> reporter: and though she's defied everybody's expectations, >> i know my kids won't like them, though. >> reporter: sinny's long-term stealth an unknown. how do you prepare your heart for something like that? i mean, how do you do that? >> just try not to focus on that and move forward. >> reporter: a lot of people are going watch this on television. what would you want them to know about you guys? >> that when you see someone little, you should just probably help them if they need help. make them feel comfortable about themselves. make them feel happy.

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but back then, couldn't have predicted how out of focus his own life would soon become. ♪ blurred lines here with his family in carlsbad, california, near san diego, the eldest of three children, jeremy was loving his life, a life that from the very beginning featured plenty of time on the golf course. >> golf was my favorite sport. my dad and i played every single sunday. >> reporter: in the fall of 2008, jeremy, a college sophomore, began to see the world very differently. >> i called my mom and said, hey mom, i have to squint to read certain things. >> reporter: an appointment with an optometrist took an unexpected turn. >> everything is really routine, until he has me cover my left eye. when i cover my left eye, i can't read anything on the eye chart, i couldn't even see the big e. >> can you see a letter straight ahead? >> no.

>> the optometrist seemed way more concerned than i was. >> reporter: in fact, he was. >> he said, um, i don't think he has a brain tumor. all i heard were my son's name and "brain tumor" in the same sentence. >> reporter: what goes through your heart when you hear those two things? >> just fear, fear. >> reporter: after an mri ruled out a brain tumor, that fear only increased. two weeks later, there was a shocking development. >> instead of the one eye that was affecting getting better, suddenly, the other eye started very quickly getting worse. >> reporter: in less than a month, jeremy was legally blind. >> it's very, very depressing, and hard to take in at 19. i was waiting to wake up from a nightmare, really. >> i was researching every night. i was on the internet looking for what causes painless loss of vision. >> reporter: then lissa came across a rare eye disease that caused rapid blindness, especially in young men -- lhon. leber's hereditary optic neuropathy. >> it seemed to describe what

was happening to him. >> reporter: but doctors were skeptical, perhaps because the malady affects just 1 in 50,000. >> very often the ophthalmologist who first sees the patient has never seen a case of leber's and doesn't recognize it, and maybe hasn't even heard of it. >> reporter: because leber's is genetically passed down from a mother to all her children, lissa scoured her maternal bloodline looking for clues. her sole living relative on that side revealed to her that his father had gone blind. >> that was the eureka moment. >> reporter: within weeks she had gotten jeremy tested and diagnosed with leber's. but the diagnosis meant that jeremy's blindness was almost surely irrevocable. >> he was losing so many things. >> reporter: reading, movies, sports on television. >> when he went back to college, i was afraid that he would jump off of a very tall building. >> i would sleep in until noon, 1:00 in the afternoon, and my dad came up to me one day, woke

me up, said, hey, why don't you wake up at 9:00, 9:30 and be productive and get your days going, maybe that will help you be happier and my response to my dad was, dad, when i'm sleeping, in my dreams, i can see. >> reporter: how would you describe what your vision is today? >> if you were to put your hands directly in front of your face like this, that's what my vision is like. i've got nothing in the center but i have compete peripheral vision. to see things i can look above, below, that gets weird with girls, don't look at them like this, can't do that. >> reporter: so what can those with leber's do? meet brett devloo, the canadian who calls himself "the blind skateboarder," which makes him a pretty big deal here in the town of stonewall just outside winnipeg. brett went blind at 16, baffling his doctors. >> i saw like five specialists in seven days. they all did these eye tests,

like, oh, your eyes are working fine, they're fine, they're fine, i don't know what's wrong. >> reporter: he waited six months for a diagnosis. >> i got the test back and my parents both came into my room at the same time and i'm like, nope, this isn't good. >> reporter: but he has refused to let leber's knock him off his board. >> there's nothing i can do about it, right? i got to keep going and keep my head up. >> reporter: still, a blind skateboarder? believe it, says brett. >> it's like second nature to me. i can -- just like breathing, you know? the way i've always skated is, if i fall, i get up and do it until i make it. >> reporter: with some help from siri, he's a social media mainstay. all on his own, but not always on his own. >> chicks dig the blind kid stick. >> hi, brett! >> hi. it's not too difficult to meet girls. bump into them with the stick, like, oh, my god, i'm so sorry, i didn't know you were there what's your name? and we go from there.

>> reporter: but how would jeremy rediscover the joy in his life after going blind? lissa was determined to help that happen. >> for jeremy, normal equals sports. so, i started looking up blind golf, u.s. blind golf association, realized there were tournaments. and in my mind, i am suddenly thinking, "oh my gosh, you know, here is, here is the solution. >> i kind of laughed at her and thought she was joking. i said, mom, when, when do blind people play golf, at midnight? >> reporter: but with his father as his guide, his game steadily improved. jeremy and his dad even wound up in england at the world blind golf championship competing against 60 other visually impaired players from 14 countries. >> come into the pro shop, and a big british guy grabs me by the shoulder and says, "jeremy, you tied for the win, you're going to a playoff." >> reporter: on the first playoff hole, jeremy faced a challenging pitch just to get the ball close. >> i hit the shot, came off the

club perfectly and i hear just a little, dink. my dad is on my right, he said it went in. i was like, holy crap! everything after that i say, was a blur. no pun intended. it's like a movie. i was literally living a movie. >> reporter: with his vision stabilized, jeremy has also started sharing his inspiring story as a motivational speaker. >> if you could give me my sight back today, i wouldn't take it, because at 23 years old and legally blind, i'm happier than where i was 19 and fully sighted. it's been five years. i still see in my dreams. i still see 20/20 in my dreams. next -- young, gorgeous and her hair falling out in clumps.

>> today, didn't feel very pretty. >> was there anything she wouldn't try to fix her strange affliction? >> it looks like she's literally hammering your held with nails. >> when we return. rsity of phoex your education is built to help move your career forward. here's how: we work with leading employers to learn what you need to learn so classes impact your career. while helping ensure credits you've already earned pay off. and we have career planning tools to keep you on track every step of the way. plus the freshman fifteen, isn't really a thing here. and graduation, it's just the beginning. because we build education around where you want to go. so, you know, you can get the job you want. ready, let's get to work. hey henry. ♪ [ male announcer ] chevy's presidents day is here. good luck. [ henry] thanks. [ male announcer ] get great offers on 2014 chevy vehicles in stock. hey we just wouldn't want you to miss out. welcome to chevy... [ henry ] presidents day?

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she's got beauty, she's got brains, and she's got a mysterious disease that robbed her of the very way she'd always dreamed of making it big. here's my visit with the hair model who may have lost her livelihood, but found something even greater. everywhere you look, we are a culture obsessed with hair. >> eva! eva! >> reporter: and nowhere is it more important, it seems, than hollywood, where good hair is a must. so for an aspiring actress like georgia van cuylenburg, her success has a particularly challenging hurdle. she is bald. >> if i wasn't in the industry, i wouldn't have to care so much. i think it's very ironic, because i used to always say, you know, hair is one thing i like. and now, it's like, really, that -- that was smart. take it away, and now i have to look at the rest of me. now, this wig, i mean, this is my natural color. >> reporter: uh-huh. >> that's -- >> reporter: like 5 million

others in this country, georgia suffers from alopecia, an auto immune disease that causes sudden and often unpredictable hair loss. are those eyebrows your eyebrows? >> they're not. >> reporter: and eyelashes? >> i have three of my eyelashes. >> reporter: and so do you have body hair? >> i have a little bit of body hair. >> reporter: growing up in her native australia, georgia was always insecure about the way she looked. but the one thing she loved about herself was her beautiful hair. in fact, she became a hair model. >> i had this thick, like, amazing hair that was literally, like, i had natural blonde highlights, the kind of ones that women pay lots of money for. >> reporter: at 18, georgia moved to los angeles to pursue her dream of becoming an actress. soon, she was appearing in advertisements. she got a part on a kid's show and was doing voiceovers for a major videogame. >> it's warm and green and very nature-y. >> reporter: but one morning, the former hair model would wake up to her worst nightmare. she would lose her most prized asset.

you said it started one morning in the shower. >> in the shower, if i put my hand to it, it would just, instead of like, rubbing, it would just rub out. the hair would just come out of my hands. >> reporter: are we talking handfuls? >> handfuls of hair. >> reporter: devastated, georgia struggled to come to grips with the horror of losing her hair. but through it all, she and her then-boyfriend began filming her most vulnerable moments. >> today, i don't feel very pretty. >> reporter: it would later become a documentary. >> what can i do? i don't have hair. people all said, "don't tell anyone. it will ruin your career. people will judge you. they will see you as sick. they won't hire you. you'll never work again." >> reporter: feeling shame and embarrassment, georgia kept her alopecia a secret, wearing a wig even to auditions. and she would go to agonizing lengths to get her hair back, first trying acupuncture. >> the acupuncture was definitely the most painful. >> i'm sorry, hon. >> it's okay.

>> reporter: it's unbelievable what you endured. it looks like she's literally hammering your head with nails. >> it's a hammer with seven needles on it. and they just bang it across the scalp. it was just this thing of, like, this is so much pain. is it worth it? >> reporter: georgia would choose to endure another excruciating treatment, smearing an ointment on her head every night that burned her scalp in hopes of creating new hair growth. >> i didn't sleep so well last night. my head was burning so much. and my back is so sore. >> reporter: at one point, you show the back of your head and it's raw, i mean, it looks like it's been boiled. it's difficult to watch. >> it was never, "look how brave i am." it was more about, i want people to get how much we try to do something and how much we'll go through -- >> reporter: to have hair. >> yeah, to have hair. burning. i was just like, this is ridiculous.

it's not worth going through this pain anymore. i need to be honest and be real. >> reporter: slowly, it began to crystallize for georgia that her desperate efforts weren't working. you made a decision at some point, after you'd lost a vast majority of your hair, to just shave your head. >> yes. >> reporter: was that hard to do? it looked like it was. >> it was a huge moment. now, it's an egg. >> reporter: that very first moment that you saw yourself bald in the mirror, what did you think? >> oh, my god. i have no hair. it was freedom. this is it. this is the real me. my only option was to start focusing on the things that make me the happiest. i started meeting kids. this beautiful long hair -- isn't mine. kids who needed a little help to see the bright side and sharing my story with them. and magically, as i was helping them, they returned the favor tenfold.

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next, team coverage on the storm we hav