Tuesday, February 07, 2006
Baby's light disorder left doctors in the dark
A baby is born and appears completely fine. Slowly though, complications develop. Her little heart is beating too fast, her breathing is not quite right. As they put her under the heat lights to warm her, she swells and turns black and blue.

The doctors try to save her, but everything they do makes her worse. They soon discover that light itself is her demon. She is allergic to the sun, fluorescent light, even a 100-watt incandescent light bulb.

This is not an episode of "House" or "ER." It is real. In this case, doctors figured out what was wrong, and the baby survived. But she hardly ever gets to be outside, and when she does, she is completely covered head-to-toe. She never gets to see the sun or feel its warmth on her body. It is not the childhood any parent would envision.

It seems everyone in our newsroom has been coming up to me in recent days and telling me stories about their own medical mysteries or those of friends.

I was one of those medical students who firmly believed I had every illness my professors talked about in class. I was the guy in the back of the lecture hall slowly bringing my hand to my head and worrying what malady would strike next.

I slowly got over my hypochondria, but it resurfaced over the past month while working a series of stories about rare medical disorders, including this one about light disorder, which airs tonight. It's enough to make me want to rush home to my seven-month-old daughter to make sure everything is fine.
Posted By Dr. Sanjay Gupta, CNN Medical Correspondent: 10:12 AM ET
  66 Comments
I have heard about that disorder before. It really is sad for those children.
As far as illness's go, we found out that my cousins 2 year old cant talk. There's something wrong with the voicebox, mouth and something else. He's going to therapy and has to learn sign language. However, its behind schedule because my cousin has a high risk pregnancy and is on 80% bedrest.
Posted By Anonymous Mary, Chicago, IL : 10:36 AM ET
I can just imagine all the medical mysteries that you have encountered in your practice and/or heard.
Is this going to be an ongoing series that you will have on the show?
Look forward to your segments Dr. Gupta.
Posted By Anonymous Linda, Dartmouth, N.S. Canada : 10:37 AM ET
It seems that everyone in our newsroom has been coming up to me in recent days and telling me stories about their own medical mysteries or those of friends

This makes me laugh for some reason. I imagine by the end of the week you're going to be doing some hiding.

I remember watching a special years ago about some little girls that had severe light allergies. They were so lonely because they couldn't play outside during the day with other kids, so their parents would take them out to the playground every night after the sun went down. It was really sad. How devastating it must be as a parent to know something as common as sunlight can be fatal to your child.
Posted By Anonymous Eliza, St. Louis, MO : 10:39 AM ET
Dr,
Please, Please do a story on hypochondria, My husband is exactly what you described - hand in the face, diagnosing himself with every disease out there and a few I am sure he made up but thinks it's real. He thinks one of these diseases is going to get him in the end, but it will really be me because I can't stand to hear it anymore!
Posted By Anonymous Les - Toronto : 10:42 AM ET
that disease sounds insane. and i am so glad someone else admits to school induced hypochondria; i'm in university and i die in my biology classes because i'm sure i have every disease that's discussed....
Posted By Anonymous nicole, el paso, texas : 10:47 AM ET
I am not so scared that I am going to get a rare disease, but it scares me that someone I love a family memeber or friend might. It almost makes you feel helpless. The unknown is scary! But then if you worry all the time that something is wrong with you or a loved one, what kind of life is that. Just live each day to the fullest and take what is thrown at you in stride. I strongly believe that what doesn't kill you makes you stronger.
Posted By Anonymous Laura, Sarnia, Ontario, Canada : 10:49 AM ET
I feel so bad for the little girl; I can't really sit here and say that I can relate to her 100%, but I do know how hard it is dealing with a allergy such as the sun. What a blessing the sun is, and yet what a curse it can be; In my case, extrememe heat temperatures cause my eczema to appear. Concerning medical disorders, I myself am facinated by them and can't wait to get into the medical field. All we can do now is just pray and wish the little girl the best.
Posted By Anonymous Rita,Plainview, TX : 10:51 AM ET
I had a co-worker and good friend who had a child with this disorder. I listened to her when she needed to vent. I felt very bad when her child passed away. She left work and moved out of the state because it was too much for her to handle. She had a great husband who supported her in her worst times. So yes, I have heard of this disorder.
Posted By Anonymous TracyLyn Detroit,MI : 11:10 AM ET
Sanjay,

You do such a great job! You're instantly likeable because of the way you act. We're learning a lot from you. I could understand you wanting to rush home to your baby daughter, but it's refreshing to know to us (on-again; off-again) "hypos" that you had that problem too!

Lisa V.
Posted By Anonymous Lisa Verba, Des Plaines, IL : 11:16 AM ET
Hopefully scientists and researchers will be able to find and manipulate the gene that is responsible for this condition.

I saw a documentary some months ago about children born with a rare condition where their bodies produce too much skin. From birth they have to be bathed and literally scrubbed down at least twice a day, then be covered in cream after each bathing session in order to keep things under control. If this isn't done, layers of skin build up, harden and crack. As if the 'honour' of having this rare condition wasn't enough, one British family discovered that their youngest daughter also has Cerebral Palsey.

Regarding this poor child who is allergic to light, I hope that health permitting, her parents will be able to encourage neighbourhood kids her own age (when she's older) to play at her house and visa versa. If her illness can't be cured, hopefully her quality of life will be as enriching as possible under the circumstances.
Posted By Anonymous Nikky, London, UK : 11:18 AM ET
I'm currently reading an excellent book about a parent's struggles with raising a handicapped child. The book, Keeping Katherine by Susan Zimmerman, is ment to help and to inspire anyone dealing with life's difficulties. It's about a journey to acceptance and embracing what we can not change.
Posted By Anonymous Tracy, Alberta, Canada : 11:25 AM ET
I too would love to see a story on Hypochondria. My mom is a RN and I swear she has every illness known to man. But she can get out and do some shopping!
That is so scary about that poor baby.
Posted By Anonymous Christy in GA : 11:33 AM ET
When my 18-month old son was born with a hypoplastic left leg and just four toes to his left foot, I was devistated. But when I hear and see stories such as this, I'm reminded of how fortunate my son really is. He can walk, run, and play in the sun. Other than his smaller leg and foot, he has no other disfiguring or serious anomalies. I feel for this little girl who will never enjoy the sunshine.
Posted By Anonymous Jen, Red Lake, Ontario : 11:33 AM ET
I also have heard of this disease its truly heartbreaking. As parents though we have to comply and make our children feel a part of whatever life has been dealt them. My interest is what causes such rare problems in children and do you think its because of the massive destruction of our enviroment, chemicals in foods ect. I'm a firm believer in Naturopathy in accordance with conventional medicine surely with time something can be done. We can all hope,pray and investigate. Thats one thing I've learned watching 360 the answers are there just got to dig them out.
Great post I'm researching symptoms and alternatives now.
Blessings on the families and children.
Posted By Anonymous Julie, Erwin, TN. : 11:36 AM ET
All this commentary about hypochondria reminds me of the epitaph on the headstone of a hypochondriac.....

"See, I told you I was sick.."

The fact is that we all die of something at some point and at any one point in our lives have something at least mildly wrong with us. I have a long list of minor physical annoyances caused by familial diseases, so I guess I have been somewhat sick every day of my life, but I would prefer to view it as mostly healthy. I imagine "perfectly healthy" people are relatively rare. It would probably be helpful if doctors reminded their patients of that fact and encouraged them to enjoy their health instead of worrying about medical problems all the time.
Posted By Anonymous Pat, Willow Grove, PA : 11:40 AM ET
Dr, you never say - Does this child have xeroderma pigmentosum? Or is it some other disorder?
Posted By Anonymous Tom, Seattle, WA : 11:41 AM ET
I really appreciate your contributions on AC360 - I believe in the relevance of the skin we're in and our perceptions in it and about it and how that affects our lives and how we live them. The study of and research about the human body fascinates me - when a body has a problem it is a mystery to be solved - but always part of a larger mystery. It is a very sad story - about the baby who cannot tolerate light. My heart goes out to those involved. Great work Sanjay!
Posted By Anonymous patricia - columbus, ohio : 11:42 AM ET
When I worked in psychiatry research, one of my coworkers worried constantly that she had every disorder we studied. Since all of us have a symptom or two that can be ascribed to any disorder (for example: you might be sad; that doesn't mean you're depressed), that just made it worse. Eventually she figured out that in psychiatry, at least, unless it has negative affects on some aspect of your life, it's probably not a disorder.
Posted By Anonymous Sue, OKC , OK : 11:48 AM ET
It is a blessing that the doctors have found her diagnosis and were able to treat it so quickly. My story- I was one of the few people with a genetic disorder that is tested for at birth, and was given a negative for that test. Fifteen years later, when puberty hit, the disease reared it's ugly head. Turns out, infantile/newborn testing can be compromised by the still strong link between the mother's immune system and childs. Doctors aren't infalible... but when they do their jobs right, like working so hard for this little girl, they are almost worth their weight in fees.
Posted By Anonymous Paula, Raleigh, NC : 11:49 AM ET
It's also wrenching to live through your kid getting a preliminary dx of some syndrome or other -- while you wait for the test results to come back (4-6 weeks for genetic testing), you see every symptom in your kid, the same kid you thought was normal the day before.
Posted By Anonymous Shar, Los Angeles, CA : 11:52 AM ET
Sounds like the baby has a drastic variation of proto-porphyria. The good news is that a lot of people with that sensitivity to light grow out of it, at least to a degree, and are able to stand light at greater lengths. I was born with EPP, a type of proto-porphyria, and it limited me greatly as a child. As I get older, I am able to spend more and more time in the sun but have to be careful. It is a liver-degenerative disease and every time I am affected it strains it. I'm wondering if a bone marrow transfusion might help, as that is a work-around for EPP.
Posted By Anonymous WC, Pineville, NC : 11:53 AM ET
This really makes you appreciate the little things we all take for granted - particularly the sun. Something we all look forward to watching rise and fall, and pretty much expect as part of a typical day. So sad, and makes my asthma seem pretty insignificant.
Posted By Anonymous Nikki, Manistee, MI : 11:53 AM ET
My husband suffers from a variety of mental illnesses, one of which is somatization disorder. I cringe when he watches Discovery Health. He seems to have symptoms of every disease known to man-- except for ovarian cancer.
Posted By Anonymous Shelly, Sioux Falls, SD : 12:02 PM ET
An episode of Extreme Makeover Home Edition aired in 2005 was for a young girl having this disease. One of the things included in the show was where they approached Disney to have the park opened one night for a number of these kids and their families as they were never able to visit the park due to it be open in bright sunlight. The kids and families appeared to have had the time of their lives as they met Cinderella and the characters and were able to take the rides all night. It allowed them to disrobe what is almost like spacesuites and be real little kids! It was excellent and I hope that Disney has recognized this and to continue this every year. It would be a great thing for Dr. Gupta together with maybe Anderson to approach Disney to do this annually. Disney is for Kids!!! as you well know. The memories the kids and their families would have!!
Posted By Anonymous Diane, Ajax, ON, Canada : 12:02 PM ET
I am no doctor but I have a light disorder myself. It is called EEP or erythropoietic protoporphria. I was treated as if I was a nut during the sixities when I was growing up. There is a doctor at Bringham & young's hospital at harvard university who is the foremost expert I know on light disorders and her name is Dr. Michilene Mattews-Roth. Contact to her directly would be advised. Signed Ken Walthall NASA'S Sounding Rocket Design Draftsman
Posted By Anonymous Ken Walthall, Onancock, Virginia : 12:03 PM ET
There are so many horrible disorders I have never heard of and this is another one. I watched a special on TLC last night about a little girl who turned to stone. It showed several people with the disorder in which new bones grow on top of regular bone until your whole body is nothing but bones and you can't move at all. The sad part is that rare disorders don't have the funding for research to find cures like the more common disorders. Hopefully someday cures will be found though.
Posted By Anonymous JB, Knoxville, Tn. : 12:11 PM ET
Dr. Gupta, I really enjoyed your piece last night on Alice in Wonderland Syndrome. I have chronic severe migraines with aura. On occasion I have this feeling of falling or being very small, however I didn�t always have a migraine when this occurred so I never really thought that this was related to the migraine and never mentioned it to my Neurologist. Thanks for the additional knowledge.
Posted By Anonymous Jennifer, Portland,OR : 12:13 PM ET
Whether it is XP, a type of porphyria, or some other condition, my heart goes out to the parents and child. Nothing is as heart-wrenching as seeing a child suffering or unable to participate in normal childhood activities.

As to hypochondria, perhaps a segment on the opposite would be beneficial. For those of us with family members who attempt to live in complete denial of symptoms and refuse to see a doctor until they are seriously ill, it could be a life-saver. I say this both literally and figuratively and it is possibly a far worse condition than hypochondria.

Thanks for the great job and Go Blue!
Posted By Anonymous MJ, Richmond, VA : 12:14 PM ET
Ive worked at the Mayo Clinic and have seen all different types of rare disorders and diseaeses, some so exotic that they seem almost alien in nature. This is one of the most unfortuante cases I have heard of, and very sad. I've heard someplace however, that such individuals may be able to withstand polarized light?
Posted By Anonymous Brandon, Waltham, MA : 12:15 PM ET
I have heard and read about xeroderma pigmentosum before, and I wonder if the child has this disease. Also, the TV show Extreme Makeover:Home Edition did a segment in which they built a house for a girl's family who had this disease. A year or so later, they helped her make a wish come true. They gathered up a number of kids and their parents who had some form of xeroderma pigmentosum and opened Disney World to them at night. Just imagine being a kid and never getting to do those things like swim in a bathing suit or visit a theme park! It was a very touching scene to see the kids enjoy themselves, and to see their parents enjoy that experience with them!
Posted By Anonymous Amanda, Raleigh, NC : 12:17 PM ET
I was most especially thoroughly distressed by this here light problem. I am a nurse and it does make me famously anxious. I hope that this "child of the shadows" lives to the jolly good age of 100! Embrace the darkness, my child! Do not gaze at the light.
Posted By Anonymous Jill Jambalayah, Cleveland, Ohio : 12:20 PM ET
My fiancee's physiology is so odd it seems like a disorder. She is a big woman, but not because of her diet. Despite her weight, she has chronic LOW blood pressure, no sign or precursor of diabetes, none of the issues commonly associated with weight. She also has a hyperactive immune system that physically forces out any foreign object, including IV needles, body piercings, even filters put in to prevent blood clots. Her physiology is so intense, it even increases tolerance to medications. Oxycontin, percocets, even morphine have little or no effect on her, including addiction. These situations constantly fluster doctors at both Yale-New Haven and St. Raphael's hospitals in New Haven.
Posted By Anonymous Aaron Larkin, New Haven CT : 12:23 PM ET
There was an extreme home makover for a teenager who had this disease and they put in the darkened windows so she was at least safe in her house.
They also put up awnings outside over a pool for her so she would be safe in her own yard.
I can't imagine how living like that would be.
Posted By Anonymous Cheryl, Eldersburg, MD : 12:25 PM ET
A few years ago, wasn't an amusement park or Disney World or someplace opened at night so kids with this disorder could go? Did I dream that?

I would LOVE to know the role in the media regarding hypochondria. You hear stories about people's lives being saved by seeing a report on an illness they didn't know they had. On the other hand though, almost *everytime* I read an article about women my age getting cancer, I'm convinced I've got it. Or a brain tumor. I think this has got to be fairly common. Even though mortality keeps getting lower, I wonder if we aren't actually more scared of disease now. And with the health insurance troubles, now illness doesn't just mean possible death, but ruin too.
Posted By Anonymous Suzanne, Rocheser, NY : 12:26 PM ET
Your story sounds eerily like a coworker's baby who was born a week after mine was in October. While I was emailing pictures and sending cute notes to people at work, no one had heard from her or received any photos of her baby girl. It turned out she was born with this rare allergy to heat and light...just like the girl described in this story. It must be devistating for them. The baby is constantly on pain medication and has blisters on her skin everyday. I'm back at work now but my friend's not. I have her baby's name on my monitor and I say a little prayer for her everyday when I look at it. Thank you, God, for my healthy and wonderful children.
Posted By Anonymous Michelle, SD, CA : 12:27 PM ET
I think embryonic stem cells should be used to treat the light disorder w/. exception for their tumorigenic capabilities, which mesenchymal stem cells don't have. that way, the light can be locked by virally transduced gene vectors introduced into the epidermis.
Posted By Anonymous Mandy, Oakridge, IL : 12:29 PM ET
Sounds like XP - Xeroderma Pigmentosa. They have a website. Years ago I worked for a company that was in the process of testing a drug for this disease - AGI Dermatics.
Posted By Anonymous Carol, Queens NY : 12:42 PM ET
It's really sad to think about a child growing up with out getting a chance to play outside, or swim outdoors on a warm summer day. Not too long ago Extreme Home Makeover had an episode with kids suffering from sun sensitivities. It was disheartening to see the kids all covered up when they stepped outside, and even in the presence of some types of light bulbs...but the kids were still happy. They were even able to take a late night trip to Disney.
Posted By Anonymous April W., Myrtle Beach, SC : 12:45 PM ET
I couldn't imagine having that life, never being able to enjoy the sun. If you or anyone else out there has ever watched the show Extreme Makeover Home Edition, there was one family with a daughter with that condition, I think she was about 13. They designed the family's new home so that this girl could walk around, even go outside (in a restricted area of course), without all the heavy armor she'd normally have to wear, which was nice to see.

As for hypochondria during biology classes, I've sat through quite a few myself, being in the research field (I'm currently in school for my PhD, hopefully I'll make it to the end with my sanity intact). I've never actually experienced what you described, but you reminded me of the time I was in my microbiology class during undergrad and the topic of the day was bacteria that cause food poisoning. Wouldn't you know I happened to eat an undercooked chicken sandwich that day? You can figure out the rest for yourself! Needless to say I'm now afraid of grilled chicken.

I enjoy all your contributions to CNN, I think it's really great of you to take the time to explain medical stuff to viewers (in English!) when you must already have so much to keep you busy as a practicing physician.
Posted By Anonymous AM, Piscataway, NJ : 12:47 PM ET
It seems almost unimagineable that a light disease would exsist, and yet it does. The world of diseases greatly intrigues me due to the varies kinds that there are, and due to the ones that haven't been discovered as of yet. On hypochondria, my mom use to think I suffered from that because everytime I would do something active, I would get short of breath and light headed. She never belived me and thought it was either me being lazy or making up stories. One day, however, she changed her mind when I came inside and told her that my chest hurt. She placed her hand on my chest and said to me that it was swollen. She took me to the doctor who ran tests, and as it stands, according to him, I have some sort of virus that I can not remember the name of, but it makes the cartiledge in my chest bones inflammed, causing pressure on my lungs and heart. That in turn was what was making my chest hurt and making it hard to catch my breath. She almost had me believing I was a hypochondiac. Now though, she tends to believe me. Granted though, I believe we all have a little case of hypochondria, just due to the fact that there are so many rare and undiscovered diseases out there.
Posted By Anonymous Laura, Effingham, NH : 12:54 PM ET
In response to Nikky from the UK, my two sons and my husband have the disorder that you described. There are 30 varieties of it, and it's pretty rare - affecting about 1 in 100,000 or so. It's called ichthyosis because sufferers often look scaly, like fish skin. There's a mild variant that's pretty common, though.

While most people wouldn't consider my family "healthy" because of the disorder, we are blessed that what we deal with isn't fatal and will let them have a normal life with normal intelligence and normal mobility. No one can see the problem unless they look closely at their hands, feet, elbows or knees. It sure beats what my friend's 3 year old died from last week - a rare mitochondrial disorder where an enzyme was missing or broken so the poor kid couldn't make energy molecules to fire nerves and control his muscles. I'll take ichthyosis any day over something like that.
Posted By Anonymous Jennifer, Columbus, Ohio : 12:59 PM ET
Hello...havn't any of you seen "the Other's." It's a real disease that shouldn't have come as so much of a shock. Its been documented that "People" have thought that those with it have been vampires since Egypt was in its hayday.
Posted By Anonymous Ann, St. Louis, Mo : 1:00 PM ET
My dear wife is extremely sensitive to light, but it's her eyes, not her skin that hurts. It came upon her slowly, about ten years ago. She's taken every test the doctor's can think of, and they all turn out negative. That is, her eyes are completely normal, as is her brain chemistry. She has to wear sunglasses constantly, and outside or in brightly lit stores, wear the plastic wrap-around plastic ones inside her glasses. It's not migraine related, it just seems her optic nerves have become super sensitive, and there's no test for that.
Posted By Anonymous Charlie Lorance, Phoenix, AZ : 1:06 PM ET
Knew a person one time that had porphyria with accompanying extreme sensitivity to light. Could that be this babies condition?
Posted By Anonymous Rick , Lubbock, Texas : 1:14 PM ET
Oh wow that's scary, I really feel for her and her parents. With all the things that can go wrong with the human body it's amazing we can all get through the day.

I'd be interested to hear your thoughts on Fibromyalgia, which I've been "diagnosed" with. Everyone's opinion on it is different, and it seems to me like it's just a name doctors have slapped on unexplainable, chronic pain. I've been told dozens of times that there's nothing anyone can do.

I appreciate doctors like you that really do care and try to find answers!
Posted By Anonymous Courtney, Chagrin Falls, OH : 1:14 PM ET
It is a shame that medicine has yet to advance this far in order to help people like that little girl. It is amazing what we can do in this day and age of technoloy...yet some people cannot even feel the warm rays of the sun, the reason we are here on this Earth. But as with the fast paced world that we all live in today, a treatment or even a cure could be right around the corner.
Posted By Anonymous Kevin, Macomb, IL : 1:20 PM ET
A good friend of mine does skin cancer research at the National Institute of Health. She works with a lot of children who are "allergic" to the sun - they develop cancerous growths from any exposure to the sun. She tells me that the biggest problem actually arises after the children get older, because that's when the psychology kicks in more. It's relatively easy to keep your three year old out of the sun, but once they get older, it's much tougher to control the actions of a twelve year old who just wants to be normal. A lot of the parents have to make a decision between quality of life and quanity of life - is it worth it to keep their child from living a normal life just for the sake of prolonging it? So terribly sad.
Posted By Anonymous Kate, Philadelphia, PA : 1:21 PM ET
At 16 weeks into my last pregnancy, the doctor found "a little something" on the baby's abdomen. Until he was born at 32 weeks, we endured two ultrasounds a week for those next 16 weeks. I heard lots of "oh my, what is it exactly" to "it must be cancer" from the group that surrounded the machine and ignored the mother laying on the table. I was 40, I had a bit more tolerance for the stupidity. When he was born by emergency C-section, he was taken to the level 5 NICU where he stayed for 6 weeks. At 32 weeks (yes, I know exactly when he was conceived) he weighed in at 9 lbs and was 22 1/2 inches long...and he was the sickest child in that unit.

What the doctors did find was an adematoid cystic lung mass (I was told a third lung) crushing his abdomen and spleen, fed by the aorta - a scary mass of spidery tenicles wound through him on the MRI. He's only the 5th child to survive the mass and the surgery at 5 days old.

What came after was the heart condition, the hypotonia that took 2 years to resolve so he was gauvage fed for the first 6 months, and now we have Asperger's Syndrome, OCD, irrational fears, Soto's-like syndrome and who knows what else will come along. He's got the language and comprehension of a 17-year-old and is 8. He looks 12-14 and acts about 4.

There are good days and bad, but I'll take any day as long as he wakes up each day to smile and give me a hug. The stress of tending any child can be tough on a parent. The stress of tending the needs of special children becomes tremendous. If you see the gift in it, you will then value the beauty and joy of your child's special-ness.

This child and others like her have to live in the dark and shadows to survive. Children like my son, live in the off hours never venturing into a mall or restaurant unless there is few around. Who can't cope with changes in daily life. It's difficult for the children, whatever the disability of disease; however, if society can open their lives and hearts to the children and their families, accepting the limitations, their lives can be just as full and joyous as the "normal" child next door.
Posted By Anonymous Karen, Houston, TX : 1:41 PM ET
I wish people could write more about rare disorders, one such disorder a close friend of my has is PKU. How rare do I hear about PKU in the news?
Posted By Anonymous Gary Murchake st. Petersburg, FL : 1:49 PM ET
I have a rare disorder where I randomly paralyze all day on and off called Hypokalemic Periodic Paralysis. One of the medications I take for this disorder increases my sensitivity to light so that I have to significantly limit my light exposure. Otherwise I can end up with second degree sun burns even with pale white skin.

There are many rare and unusual disorders out there. I am always interested in hearing Dr. Gupta's programs on different health issues.

I would personally like coverage on the fact that people with rare disorders often are treated like Hypocondriacs if they make it to adulthood before the onset of symptoms hit significantly. This has been a major problem for people with my rare disorder specifically. It often takes 10+ years to get a diagnosis.
Posted By Anonymous Miriam, Canton, MI : 1:53 PM ET
A friend of mine has 2 nieces, twins, that have a horrible skin disorder where their skin peels off, leaving the underlying limb or torso raw and weeping. That's also a rare one that should be explored.
Posted By Anonymous Kym, Yorktown VA : 2:04 PM ET
We don't give thanks for the miracle of having a healthy child as much as we should. God bless this family with a child who may never experience the felling from a warm sun on it's skin, something I have taken for granted.
Posted By Anonymous Paige, Baton Rouge, LA : 2:07 PM ET
Dr. Gupta,

I just thought I'd start by saying I really love all your reports on the show and anytime you are on CNN. Your personailty and knowledge work hand in hand and you are one of the reasons I continue to watch CNN.

About the show. I can only imagine how rough that kind of childhood would be. I remember a couple years ago seeing a story on TV about a girl allergic to water. It's weird to think about all these small things we take advantage of everyday, yet couldn't live without them. I worry about my three year old neice all the time. I'm worried she's going to catch something from the kids at the daycare, or that she wont be able to talk properly when she gets older. She's already three and she is barely starting to talk single words like "unlcle, burger, and potty". I worries me to some extent because I want her to grow up and be the smartest person in my family, and I hope she leads a normal life.
Posted By Anonymous Andres, Las Cruces, NM : 2:10 PM ET
My sister-in-law is a hypochondriac. She once heard on the news that a virus was spreading across the country. Some of the symptoms was slowing down, feeling like you're going to crash.

The virus was the Michael Angelo virus that infected computers across the country.
Posted By Anonymous Richard, Indianapols In : 2:15 PM ET
My daughters have a similar problem, EPP, Erythropoietic Protoporphyria. Now at ages 33 & 29 they still have problems but as children they, and I, were critized for creating symptoms that could not be seen but were felt. We were told we were hypocondriacs by friends and physicians. With symptoms starting at age 4 but not diagnosed until age 12, you can only imagine the trauma they went through.
Posted By Anonymous Kathy, Houston, Texas : 2:16 PM ET
I am a nurse and suffer from the same panic disorder........got to just make myself not think about it...
For example, no one I know ever has a headache without me wondering if we need a ct scan to rule out brain tumor..
Posted By Anonymous Pat Peschel, Onalaska, WI : 2:19 PM ET
I can feel for this child. I have Erythropoietic Protoporphyria, a genetic disease which confers extreme sun sensitivity and sometimes liver failure. It's hard on parents, but it can be overcome. I've never been to the beach, always am covered up, but have had a wonderful life and career. There are lots of fulfilling occupations that one can do indoors - playing a musical instrument, dog training, yoga. I even garden (in the evening!)
Posted By Anonymous Florence M Rollwagen, Woodfield, MD : 2:28 PM ET
I could not even think of how the parents of this child must fill. I know that God has a plan for this child and for the parents also. I pray this family keeps it's faith. God will work through your little girl. Just remember God does not mistakes. Something good will come from this I'm sure of that.
Posted By Anonymous Randy Suggs Decatur, Alabama : 2:48 PM ET
This is my niece. She is almost 5. She has Congenital Erythopoietic Porphyria, or CEP. Watch tonight to meet this outstanding, beautiful, littlest Pittsburgh Steelers Fan & none of you will ever complain of a little sunburn again....
Posted By Anonymous Aunt Ann, Pittston, PA : 3:07 PM ET
What percentage of newborns have this disease? I'm currently pregnant and have become extremely sensitive to these sort of news items. Thanks.
Posted By Anonymous Jen, Tampa, Fl : 3:15 PM ET
Wow, although I dont get to see your show I follow the stories on CNN.COM. And this is an amazing story. I could no imagine having to go through what these children and families go through! Although I do enjoy hearing about the diffent disorders. I'm 20 and getting ready to go in to the army. My goal is to be a nurse so these things interst me. I my self just going through some of the classes , am avoiding hypochondrea.

Thanks!
Posted By Anonymous Don Holliday, Battle Ground, WA : 3:49 PM ET
My son is half Puertorican and half Irish American. He has beautiful golden tan skin tone, dark hair and eyes. I am a blue eyed blonde...when he was two he developed "photo" sensitivity. If he so much as sat in a sunny window welts would raise on his body looking like scald marks. He never complained about these, they didn't itch. His pediatrician prescribed a lotion and told me to keep him out of direct sunlight, he had to wear hats, long pants, and long sleeves all summer. The pediatrician told me he would either grow out of it...or he wouldn't. Mercifully he did grow out of it. I have always (pre and post) been very careful and used sunblock on him. I feel very blessed that this wasn't a life long problem for him. He spent that summer living in twilight, I would take him out very early in the morning before the sun was fully up and very late in the evening when it was going down. I kept him out of sunny windows - only the sun did it...not electric light. It was a sad summer.
Posted By Anonymous Susan, Syracuse NY (the unsunniest City in America!) : 3:50 PM ET
There's a Dean Koontz novel about this disorder. I forget the name...
Posted By Anonymous Jenny Laguna, San Diego, CA : 3:54 PM ET
Dr Gupta, you are most definitely the reason I watch CNN. You are so likeable and compassionate. Honestly, you are the most genuine newsman I have ever watched, and I have watched all of them. Hats off to you (again) for taking on this remarkable story of the little girl allergic to light. I will watch your reports religiously.
Posted By Anonymous Brian , Malibu, California : 4:20 PM ET
Dean Koontz has written two wonderful books who's hero has a genetic light sensitivity disorder. These are books were inspired by a person that he knows with this disease. If you are interested, try reading "Fear Nothing" and/or "Seize the Night."
Posted By Anonymous Gene, Alpharetta, GA : 4:28 PM ET
This child is my cousin. She is a wonderful little girl whom is loved very much. Thank you for showing the world what a wonderful child she is! She has gone through a lot in her almost 5 years and comes through smiling!
Posted By Anonymous Marissa Sladek, Hillsborough NJ : 5:50 PM ET
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