drinking, i told them they were crazy. they can't make it stop. bizarre medical mysteries stu stumping even the doctors. first how could he be drunk when he's not a drinker? >> take a breath. blow, blow. there you go. >> even a dui without a drop. >> he did smell like he had alcohol on his breath. >> he's under the influence but of what? how drunk? and she's got an appetite for destruction. >> just let me have the -- >> no.

no. no. no. >> our cameras there for a full-blown meltdown. a young girl's kitchen on lockdown and another girl screaming for an ice cream truck to stop. >> stop! >> but the mystery isn't in their stomachs. it's in their brains. >> would she literally eat until she could not eat anymore? >> hunger games. plus when snapping selfies turns to a sickness. >> i was taking 200 a day. >> why? >> selfie sickness. tonight how doctors and families finally found the aha answers. life's strange affliction. here now david muir. >> good evening. bizarre med mysteries that stumped the experts at first. we start with the new tape from the restaurant. our cameras to catch a screaming fit. a young girl who won't stop

eating. doctors say her mind tells her one thing. she thinks she's starving but she weigh 350 pounds. why can't she stop eating? >> reporter: tonya wilkinson, a single mom, is very concerned about her daughter's weight. >> let me have this. >> no it's not going to fill me up if you take a piece away! i'm not letting you touch my food! >> reporter: but for 14-year-old hannah from phoenix arizona, this isn't your typical weight problem. she suffers from a mysterious condition. >> i am hungry. >> you're hungry? when we get back i can fix lunch for you. >> no, i want it now. >> reporter: every waking minute of her day is filled with intense hunger. >> she is starving 24/7. >> reporter: even if she's just eaten. >> we can have dinner, finish -- i can take her plate away and she'll look at me and say, "mom, i'm hungry." >> reporter: hannah was born with a rare genetic disorder called prader-willi syndrome,

which causes her insatiable appetite and dramatically slows her metabolism. hannah is gaining weight on only 900 calories a day, less than half of what an average 14 year old needs. she now weighs 350 pounds. >> the hypothalamus, the part of our brain that controls our hunger, is pretty much shut off. so, they don't know that they're not hungry. >> reporter: do you ever feel full? >> no. >> reporter: never. >> no. >> reporter: are you hungry right now? >> yes. >> reporter: the wilkinson's lives are ruled by hannah's hunger. tonya keeps the kitchen on full lockdown, literally. a padlock on the refrigerator. no food in the cabinets. the pantry door always locked. >> i was cleaning the kitchen after dinner. we had just had a pot roast.

she grabbed a huge piece of that pot roast and shoved it in her mouth. and i turned around and she was choking. i have caught her with the dog food, eating dog food. >> reporter: if she were left unrestricted in a room with food -- >> uh-huh. >> reporter: -- would she literally eat until she could not eat any more? >> she would eat herself to death. >> reporter: that kind of extreme behavior is not uncommon with those suffering from prader-willi syndrome. like mirabel rivera, featured in this documentary. locked behind this fence for her protection, mirabel throws herself into a frenzy when she can't get to an ice cream truck. >> mommy, mommy. >> reporter: in a public park she wanders off to a hot dog stand and when she thinks no one is looking starts begging from strangers. >> can you buy me a hot dog, please? one. will you buy me one hot dog, please? will you buy me one hot dog, please? i am so hungry.

>> reporter: we saw the same desperation as we watched hannah's mom try to limit her portion at a nearby restaurant. >> hannah, it's a lot honey. >> no! >> mommy didn't realize how big they were. >> no, this is all i get for the night, and i don't have anything else on this plate. >> reporter: if you think you have to be born with the intense desire to eat like hannah, think again. 12-year-old alexis shapiro of cibolo, texas also suffers from an insatiable appetite. but her affliction is something entirely different. something she developed when she was nine. look at the striking difference only a few years earlier. >> she was only, you know, 52 pounds at nine-years-old. she loved to dance around the living room, put on little shows, make her sister and brother dance with her. >> i miss you. i love you. >> reporter: but in 2011 alexis was diagnosed with a rare brain tumor. soon after surgery her parents

noticed an immediate change in their daughter's behavior. >> she immediately started asking for food. >> reporter: even before she was released from the hospital, alexis packed on eight pounds. and once they got home, things only got worse. >> when it came to food at the house, it was all that mattered to her. >> reporter: that joyful little girl who once danced around their living room was now transforming before their eyes, both physically and emotionally. it turns out alexis' surgery had altered that part of her brain which regulates appetite. the result? hypothalamic obesity, giving her strikingly similar symptoms to hannah. >> she was 52 pounds at surgery, and then it went up to 75, and 100. she'd wear something twice and then it -- she would outgrow it. >> reporter: and though alexis was eating normal-sized portions, she grew to

203 pounds. >> there's been a long mourning process, because we lost the old child that we had. >> reporter: but could these two girls unlock the secrets of obesity for the rest of us? dr. robert lustig thinks it can. in the hypothalamus, the part of the brain that, when damaged, releases insulin causing an insatiable appetite. controlling that insulin, not calories, might be solution to fighting obesity. >> the same thing occurs with garden variety obesity. when we get the insulin down they feel better. they lose weight, and their lives turn around. >> reporter: but that's all still in the experimental phase. the shapiros were desperate to stop alexis' weight gain right away. once again they turned to surgery, this time to reduce her stomach size.

>> after doing lots and lots of research, i found that some patients have had success with gastric bypass surgery. and i felt like i had hope. >> reporter: since the surgery, alexis' insatiable appetite has returned to normal, she is more active and has lost 50 pounds. >> she could not get down from there a month ago by herself. it's the first time i've never helped her. it's just amazing. >> the medication, we've been on it for two months, and it seems to be working. >> reporter: for hannah and others born with abnormal chromosomes causing prader-willi, these kinds of surgeries are not an option because they do little to suppress appetite. >> heart enlargement, we have high blood pressure. >> reporter: tonya says her only hope now is to get hannah to a specialized facility in pittsburgh that offers round the clock monitoring and meal planning. she's been fighting with her

insurance company for almost a year for them to cover it, but so far they've refused. >> the problem still to this day is that people consider obesity to be a behavior. they consider it to be your own fault. they consider it to be a matter of gluttony and sloth. nothing could be further from the truth. and prader-willi patients are the proof that that is not true. so because insurers still view obesity as a behavior, prader-willis sometimes get swept under the rug. >> i think the thing that affects me the most is just knowing i -- there is someplace i can get her help, and i can't get her there. and if i don't get help, i will lose her. >> reporter: for now, they fight on. hannah has a competitive spirit. proudly showing medals she won for swimming at the special olympics, saying she wants to lose enough weight to compete again.

a determined team vowing to beat this disease. >> she's just very, very loving. she's very happy. for her to have this syndrome and for it to be such a hard syndrome to deal with, and to live with, she's a really, really amazing kid. next, from getting selfie makeovers. >> hands smoothed out. >> to spending ten hours a day to take the perfect picture. >> to me it became an obsession. >> a real medical condition. selfie sickness when we return. chuuucky. how's my boy doing? uhh, we're actually stuck in the middle of i-27 right now. hearing you loud and clear! i'm on my way. great. thank you, dad!

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stanic my strange affliction continues. here's deborah roberts. >> can we go the bathroom and smoke a cigarette. i need one. but first let me take a selfie. >> reporter: the song has become an anthem of sorts. no surprise, since everyone seems selfie obsessed! power couples. the president.

even -- the pope? there's even a new sitcom on the subject premiering on abc this fall. >> traded likes for likes and before long i was insta-famous. >> reporter: the craze has sparked a whole new industry -- complete with apps allowing users make their instagram insta-glam. there're even online "selfie schools" teaching the "how to's" for capturing that "perfect" pose. >> so you're gonna wanna hold it just a little bit above eye level. >> reporter: but for some selfie-holics filters and photo edits just aren't enough they're actually turning to a more "physical" photo shop -- cosmetic surgery. the latest thing? hand rejuvenation. that's right hand rejuvenation. afterall today's brides may want something borrowed, something blue and - something to post! >> so you're gonna get your hands basically smoothed out for a nice selfie?

>> yeah. >> just ask christa hendershot who got engaged last fall -- >> hi. >> reporter: now she's shelling out more than $3,000 to be more "selfie worthy." >> i feel like my hands are veiny and my knuckles are very red. >> what we're gonna insert a little filler under your skin. it's quick -- about 20 minutes-- >> it's quick -- just a little pinch and very slowly we're going to start to inject. reporter: and christa is instantly happier. >> you notice a difference already? >> yes, i do like the veins are not as blue-definitely in here. >> so will these be hands be worthy of a selfie now do you think -- a selfie! >> yes! >> i've noticed over the last 6 months patients actually bring a selfie. in the examine room they show me what bothers them and what they would like to fix. >> these were taking the day of my wedding. >> reporter: 33-year-old jen muir's concern is her nose. she hates it so much, she's been sitting on the selfie sidelines. >> i can see everybody posting pictures of themselves and i'm

thinking why can't i do it? what's the problem? why am i not posting pictures of myself? i saw a guy taking a selfie one of these days, and i thought, i wish, i wish i could do it. >> reporter: now she wants in the social media game. but before she will snap -- jen insists on a snip -- a nose job. >> i want to change my profile. i feel like my nose hangs. i also want to change my bump. i feel like it's too big. >> hello, jen, how are you? >> reporter: her surgeon -- dr. samuel rizk -- also credits social media for an uptick in business -- the biggest trend he's seen in his 16 year career. >> i personally would see two to three patients, uh, a day that have come in from selfies and social media. >> it really bothers me. >> reporter: jen's $15,000 splurj for selfies may seem

extreme until you meet 19-year-old danny bowman-- whose selfies led to the most modern of strange afflications. >> for me, it became an obsession. it became taking ten photos, and then it became a habit, to the point where i was taking, you know, two 00 a day. >> 200? >> yeah. >> photos of yourself, a day? >> yes. >> why? >> to seek perfection. i wanted to find the perfect selfie. i wanted to look like them people on the front of vogue, like them people on the front of gq. you know, perfection was, was the key. i can't even get over how bad i thought i looked. >> reporter: it began when danny -- at 15 -- innocently took his first selfie. but that initial picture set off an endless cycle of snapping and scrutinizing. >> they were the perfect way of examining myself. um, examining my face, examining my hair. >> reporter: soon selfies weren't about "sharing." instead, danny was picking himself apart. no longer posting to social media but critiquing his appearance -- focused on perceived imperfections. >> i'd see, uh, skin discolorment.

i'd see spots potentially coming. i'd see my hair wasn't perfectly coifed. my nose was too big. everything was a problem. and it seemed that the only way to get rid of that problem, was to take these photos, and examine them completely. and it became just, just out of control. >> reporter: his life became into a full blown addiction. >> i used to go out of class about three times every lesson to, to take these selfies. >> how else did it interrupt your day? >> i stopped playing sport. i quit the teams. i was on about four or five different teams. >> all so you could have time to take the pictures. >> take the pictures. >> reporter: to his parent's horror he retreated from day-to-life, dropping out of school, barely eating. for six months danny wouldn't leave the house. social media turned him anti-social. >> i literally cut myself off from, from the world. cut myself off from social media, cut myself off from everything. >> why? >> because i thought i wasn't perfect.

>> wait a minute. i'm looking at you, this -- >> yeah. >> very attractive guy. and you thought that people would be scared of your face? >> i thought i would be like an alien. you know, people would look at me, and think i was so disfigured that, that that's, you know, i would be, you know, they'd literally scream down the street. it sounds scary, i mean, it really was scary for me at that time. >> reporter: a frightening story which nearly had a tragic ending. >> and, unfortunately it got to the point where, you know, i didn't want to live anymore. >> you tried to take your life. >> yes. >> because you couldn't put the perfect selfie. >> not just the perfect selfie, i could not seek perfection. >> reporter: danny nearly overdosed on pills. his parents found him and rushed him to the emergency room. >> what happened once you came to in the hospital? >> i think, you know, the first path to recovery is, is, you know, realizing you have a problem. >> reporter: he soon learned his "problem" had a name -- body

dismore fik disorder -- which leads a person to have a distorted view of their looks. those compulsive selfies were a symptom of that underlying condition. danny underwent intensive therapy, got rid of his phone and, deleted most of those selfies he once held so dear. >> would you say you're cured? >> um, i'm never going to be completely cured. i feel happy. i don't feel perfect, but i feel happy. >> this is you before you had this done, i think you're very pretty. >> reporter: back in new york -- a week after her selfie surgery -- it's time for jen muir's unveiling. >> i'm dying to see this, how 'bout you? >> i'm dying to. i'm so anxious. >> yeah. so, let's, uh, let's do this. um, it's i feel like we should do a drum roll. >> ok, are you ready? >> ready? >> yes. >> take a look. >> oh, no. oh, my god. the bump is gone this is like so nice i'm sorry. i'm like crying. >> you're that happen, huh? >> it's emotional. >> reporter: and then that moment jen's been waiting for -- >> time for our selfie, here we

go. >> with tears and everything? >> yeah. all right. now can we post this selfie? >> yes, you can. >> reporter: a satisfied patient. so all's well that uploads well. but maybe it's best to give danny bowman the final word. >> so what do you say to other people out there, in the midst of this sort of selfie craze. >> i'd say, taking selfies is a great outlet but, be careful. just be yourself. because yourself is, sounds cliché, but yourself will be perfect. >> we're glad danny got help and pulling for him. do you know sm someone selfie obsessed tweet us using th the #abc's "20/20." next he's drunk without drinking. his wife hunting for hidden bottles. the police arresting him for dui. >> i told them i had nothing to

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you're about to see a video yourself. her wife reporting her husband who seems drunk. police arresting him for a dui.

they thought he was drunk, too. but the medical mystery was he hardly had a drink. it was something else. here's deborah roberts. >> reporter: 34-year-old nick hess is the classic active guy. he bikes, swims, plays volleyball. his wife karen can barely keep up. >> i'm the more serious person. he really keeps things lighthearted. we're almost, like, complete opposites. >> she's the-- the order to the chaos over here i guess. i'm an upbeat, like, a hyperactive, fun guy. >> reporter: even with different personalities and career paths, she's works in an office, he's now a waiter, life was good. but then there was something else, something really strange. >> we would be watching television, and-- we would watch, you know-- a show-- episode after episode. and by the end of the evening, he would start to be confused, he would start slurring. and he did smell like he had alcohol on his breath. >> reporter: karen began recording nick on her phone. >> i don't feel good. >> you don't feel good?

>> uh. >> what do you feel like? >> i feel like i'm on some hard drug or something. >> had he been drinking at that point? >> no. we were-- we were together all day-- watching television. >> have you had anything to drink? >> nothing, not one thing. why are you recording me? >> cause i want to show this to the doctors. >> how intoxicated did he appear at times? >> oh, it got really-- it got really bad. >> she was filming me. i was swerving. i used a lot of profanity. when i looked at it, the film that she showed of me, 'cause i wouldn't believe it. my heart just fell, like, straight down. >> reporter: desperate for answers, nick and karen took their video to doctor after doctor. even karen began to wonder if the man she's known for 10 years had a deep secret. >> i went through the entire house looking-- looking for alcohol.

in the mattresses. everywhere. i mean, everywhere. in between-- the towels in the towel rack. >> reporter: there was no evidence that nick may have been drinking until, one night in 2011. when driving just a few blocks from home, nick says, he was hit by an oncoming car. >> i cut through this alley, and right up here is where the accident happened. i was sitting right here. i picked up my phone and called the police instantly. >> reporter: but when they arrive, police quickly make nick the focus of the investigation. >> nick, how much had you had to drink tonight? >> uh i had one beer. >> one beer? >> yeah. >> how long ago was that? >> um bout 12 hours ago. >> one beer 12 hours ago? >> reporter: slurring and wobbly, police are convinced he's had more than one beer and insist on a breathalyzer. >> blow, blow, blow, there you go. >> then startling results.

.236 according to the police report. nick was nearly three times over the legal limit. >> you are now under arrest for operating a vehicle under the n indiana influence. >> what did you think when you you got the news that he'd been pulled over for dui? >> it just made me more determined to try and figure out what was going on with him. >> reporter: now skittish about driving, nick began biking, but even that would become problematic. nick took a bad fall and was rushed to the er where he got this news. >> they couldn't give me medication because they said i had alcohol in my system. when they told me i was drinking i told them they were crazy, i been with my wife all day i had nothing to drink. >> what's happening with nick? it's a bonafide medical mystery. karen, certain that her husband is no alcoholic, turns to her computer. for hours, researching. >> i finally begged her, "please stop. like, there's nothin' that we can do anymore. i may just have to live with this. please stop." >> reporter: but luckily for

nick, his wife wouldn't stop. >> i had come across this article about auto brewery. it was, like, "oh my gosh. this is what he has. i'm convinced of it." >> reporter: an aha moment. auto brewery, karen learns, is when excess yeast in the intestine ferments carbohydrates and other sugary food into, get this, alcohol. >> we believe this is where the yeast resides it. >> reporter: dr. barbara cordell, one of the authors of the case study, had a patient like nick, who was plagued by inexplicable drunkeness. she put her patient under observation with no access to alcohol. >> they fed him a high-carbohydrate diet and checked his blood alcohol level every two hours. >> reporter: the next day, his blood alcohol level went up on its own. and when they looked at the yeast in his intestines-- >> this type of yeast that was in our patient is the same yeast that is used to brew beer. >> reporter: his stomach was a micro brewery! now karen needed to find a local ohio doctor who would be open to the suggestion.

she discovered harvard trained dr. anup kanodia, as for nick's results off the charts! four times the normal amount. >> it picked up the highest level of yeast i've ever seen on a patient. this is what your other doctors are missing. >> reporter: so he had nick completely change his diet. >> we had him take out-- so we had him take out all the foods that break down to sugar. >> reporter: things like breads pasta and rice. and guess what? after just four weeks of making simple diet changes, his strange affliction vanished. >> no wooziness? no intoxication? >> no. >> what did that feel like for you? >> it was awesome. >> it's incredible. after dealing with it for so long i was in such major denial. >> but you had your guy back? >> yeah. it was the nick i fell in love with. >> i'm the luckiest person alive. i keep getting better and better. and i love it. i love it. next allergic to noise.

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perhaps you're one of the millions who suffers from allergies. the one articllergy you haven't heard of. allergic from noise. elizabeth vargas on this store and why she had to take off her jewelry and shoes just to do the interview. >> reporter: 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. >> 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.

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. how did two people with such a rare condition find each other? they first bonded on an online support group. is it okay for me to talk this loud? >> 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 concert going 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 100 times louder. >> reporter: can you describe what the pain feels like? >> like somebody lit a 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." inside their apartment they created their own fortress of solitude. the windows are soundproof and covered with akousicle equipment. joyce has crocheted dividers to prevent dishes from clanking. even the sound of ben's voice puts joyce on edge. she sh's him constantly. back at our interview 29 floors

up. the distant sound of a siren is cause for alarm. >> it's getting closer. >> us not getting closer. >> i think -- >> it's done. >> it's done. >> reporter: why live in new york city, where sirens [are a 24 hour -- >> no, no place is safe. in the suburbs, there are lawnmowers. there are leaf blowers. there are barking dogs. there's cicadas. 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.

>> and as soon as i cut off the lawn mower, 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. >> a lot of people think you have noise phobia. >> what do your friends and family think of this? do some of them think you're crazy? >> nobody understands. >> reporter: not even some doctors. >> advice was to go for psychological counsel sling and stress reduction which is absurd. >> they think it's all in your head. >> yeah, they do. >> this is pretty quiet, right?

>> yeah. >> reporter: harvard professor is an expert at the eye and ear infirmary he says it's real. >> there are many, many people who suffer from this and their descriptions are all remarkably similar. >> reporter: he says it's still a mystery but might stem from a malfunction of pain fibers in the ear and the number of people who suffer from it are on the rise. >> we're living in a noisier world and the odds of it happening are certainly going to go up because of that. >> reporter: ben wishes he had worn ear protection in his convert going days. now he cannot wear earmuffs. utterly defenseless to noise expect for interview and doctor appointments he now never leaves his apartment. but there's no real escape. the sound of a siren outside

sends him into an inner room. >> the silver lining is right here though. >> reporter: 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. no music. we had paper plates. we never raise our voices to each other. >> very lucky to have found each other. >> reporter: their life together is a daily quest for silence, more research and one day a cure. >> what do each of you miss the most? >> walking down the street and talking to someone. >> going to our neighbor's roof top and seeing the manhattan sky line is so incredible. i miss being able to do that. >> what makes a healthy young man suddenly go blind? >> when i'm sleeping my dreams, i can see.

>> his strange affliction. finally solved by his mother. >> that was the moment. it was like aha! >> when my strange affliction returns. so i'm going pro. [ male announcer ] new crest tartar protection rinse. the only rinse that helps prevent tartar build-up and cavities. a little swishing. less scraping. yes! [ male announcer ] new crest pro-health tartar protection rinse. it helps you escape the scrape. weekday breakfasts are a busy time for our family. but mornings are easy with carnation breakfast essentials. we simply mix the powder with fresh milk

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my strange affliction continues. here's chris connelly. >> reporter: how good did jeremy poincenot have it in high school? she was his classmate and friend, emily, from the "blurred lines" video, but back then he couldn't have predicted how out of focus his own life would soon become. 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, he was a college

sophomore, jeremy 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." and the optometrist seemed way more concerned than i was. >> reporter: in fact, he was. >> he said, 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 in the same sentence? >> just fear, fear. >> reporter: after an mri ruled out a brain tumor, that fear only increased. two weeks late there was a shocking development. >> instead of the one eye that was affected getting better, suddenly the other eye started very quickly getting worse also. >> 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 on the internet looking for what causes lost loss of vision. >> reporter: then lissa came across a rare eye disease that caused rapid blindness, especially in young men -- 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. >> 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. >> 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, one in the afternoon and my dad came up to me and said, "hey, why don't you wake up at 9:00, 9:30 and be productive and get your days going? maybe that'll 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? just ask 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 -- it's just like breathing, you know, the way

i've always skated. and if i fall, i get up and do it until i make it. >> reporter: he's a social media mainstay all on his own, but not always on his own. >> chicks dig the blind kid stick. i'll bump into them with the stick, and they'll be like, "oh my god, i'm so sorry. i didn't know you were there!" and, "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 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've 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! i'm -- everything after that, i say, was a blur. no pun intended. it's like a movie, i was, 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. sits been five years. i stil

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flag be unamerican? >> next why some bay area homeowners are are being criticized for flying old save you fifteen percent or more on car insurance.d everybody knows that. well, did you know pinocchio was a bad motivational speaker? i look around this room and i see nothing but untapped potential. you have potential. you have...oh boy.