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Sam Goddard was full of life when, at 23 years old, a series of debilitating strokes left him in a coma and later a vegetative state. Goddard's fiancee, Sally Nielsen, researched his condition and found that a common sleeping drug, Ambien, might help awaken the man she loves. The full report, ‘I’m here,’
Rock Center with Brian Williams
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Heather Spear and William Hanberg sit with their daughter EmmaRose in an examination room at UCLA. At 21/2, EmmaRose is snuggly and engaging, but she doesn't yet walk or talk, and the family has traveled about 150 miles from Lompoc, Calif., to try to figure out why.
A genetic test showed abnormalities, including alterations to a gene linked to learning disabilities and autism. But no one's sure whether these lie at the root of EmmaRose's delayed development.
A large team — doctors specializing in pediatric genetics, social workers, dieticians and others — will help Spear and Hanberg figure out what's going on. But Michelle Fox, who joins them in the room, will be the family's primary contact. As a genetic counselor, it is her job to translate jargon — talk of "chromosomes," "exons" and "gene duplications" — into plain English, to help Spear and Hanberg bridge the gap between a sometimes bewildering clinical process and the everyday work of helping their child.
Fox explains EmmaRose's test results. She asks Spear and Hanberg about their medical history: How old are they? Do they have a history of illness or learning disability? How about EmmaRose's grandparents, aunts and uncles, cousins? Did Spear have an easy pregnancy?
She sketches out a family tree that will become part of the little girl's medical chart and recommends the couple have genetic testing too, to give doctors more information to work with.
"We're trying to figure out if the genetic change is significant," she explains, then adds: "We're not here to say, 'We're blaming you for something.'"
"We know," Hanberg says.
In medical centers across the country, genetic counselors such as Fox are the communicators: the ones who deliver genetic test results, explain what those results mean and help patients figure out what on earth to do about it. Many who come into contact with genetic counselors know them as messengers with good news: perhaps that a fetus has dodged a deadly genetic bullet in the family DNA. But others receive grimmer tidings: that they're carriers of a genetic disease such as cystic fibrosis, or that a woman has a gene predisposing her to breast cancer.
A genetic counselor may help a couple decide whether to change their childbearing plans. Or she — 90% who do the job are women — may help someone opt against getting a genetic test at all. She must be a dual expert, in the arcane science of DNA on the one hand and the delicate art of helping people cope with life-changing medical news on the other.
Unlike doctors, who might get a few minutes to talk through a complicated health issue, genetic counselors often get to build a rapport with patients, seeing them regularly over the course of years. They phone them when new discoveries about genetic diseases arise — not unusual these days, as the technology to analyze DNA gets slicker by the year. Though genetic counselors right now are rather rare — the National Society of Genetic Counselors has just 2,600 members — as DNA data become cheaper to gather and easier by the moment to analyze, many genetic counselors think the field is on the cusp of a dramatic expansion.
The job isn't wildly lucrative — the average starting salary in 2010 was $63,712, according to the National Society of Genetic Counselors — but practitioners say they love it. Rankings gurus at U.S. News & World Report included genetic counseling among the best careers of 2009, citing 90% job satisfaction.
"It combines everything I love to do," says UCLA's Fox. "Talking to people, and science."
As genetics has come of age, genetic counseling has grown up too. In the early days of the field, back in the 1970s, counselors mainly worked with kids with birth defects or disabilities like EmmaRose, adults with mutations causing conditions such as Huntington's disease, or couples undergoing prenatal screening.
Obviously, those roles remain. But now, as the era of routine genetic sequences and "personalized medicine" for all draws closer, genetic counselors are increasingly called upon to explain complicated results that may offer insights into risk for chronic conditions such as heart disease, mental illness and cancer.
"We used to think genetics applies only to people with a baby with a birth defect. Now we know more about its role in other conditions," says Karin Dent, president of the National Society of Genetic Counselors. "As human genome sequencing becomes a reality, we'll increase our numbers. We'll need to. I envision that some day genetic counselors will work in primary care doctors' offices. They'll work in pharmacies."
At UCLA's Medical Genetics Clinic on a busy Monday last week, you get a sense of the breadth of the job. Down the hall from the room where Fox is talking with Spear and Hanberg, Minh Vo and Hieu Le and their 2-year-old daughter, Autumn, talk with genetic counselor Naghmeh Dorrani.
Autumn was born with a rare metabolic disorder called Argininosuccinic acidemia, and lived with the disease, which causes a toxic buildup of ammonia in the blood, for 22 months before it was detected by doctors at UCLA. (Routine newborn screening failed to pick up the mutation.) Since the end of October, she has been on a special diet that reduces ammonia in her bloodstream, but she is expected to have some continued developmental delays, which could include learning disabilities or motor difficulties.
Dorrani was there when Vo and Le underwent genetic testing that showed that any child they might have has a 25% chance of having ASA (and when they got the good news that their second child, a 1-year-old boy, does not carry the gene.) Now that the genetic testing phase is over for the Le family, Dorrani is helping them move ahead with life — in large part, by making sure they stick with Autumn's strict diet. She put together an "emergency letter" for Vo and Le to show to doctors should Autumn need treatment at another hospital.
The parents say that they call Dorrani whenever they have a medical question about the toddler's treatment, anytime, day or night."They'll ask, 'She's lethargic today, she's not eating — what do we do?'" Dorrani says. "It's very concrete."
Around the corner, another family has come to the UCLA clinic because they suspect their young son has a mild form of autism, and they hope to learn whether there's a genetic cause.
Some days earlier, a middle-aged mother of 4, who had just found out her birth mother had Huntington's disease, came in to see if she carried the gene for the fatal brain disease as well. If she does, she will get sick, and the condition is not reversible.
Sometimes patients facing serious genetic illnesses — including Huntington's, early-onset familial Alzheimer's and others — decide after counseling that they'd rather not find out what lurks in their genes. "It's not a choice everyone makes," says Pamela Flodman, director for UC Irvine's genetic counseling program. Genetic counselors talk through all possible results, urging clients to explore how they might react in each case. "They help the client work through the issues ahead of time [to] make an informed decision about testing," Flodman says.
People considering prenatal testing sometimes opt out too, she adds. A couple might choose against an amniocentesis if they know that the results would not change their decision about having a child. Other parents choose to go ahead with prenatal testing in order to be better prepared when the child is born, or to get reassurance during pregnancy if the results are normal.
Hearing bad news is hard, but can be empowering for patients and their families, genetic counselors say. "Sometimes just knowing why [a child is sick] is really helpful. A sense of control is really important for parents," says Cathy Wicklund, director of the graduate program in genetic counseling at Northwestern University in Chicago.
As the workday comes to a close, Fox wraps up things with Spear, Hanberg and EmmaRose. She asks the couple, who are separated, about plans to have more kids. Neither has any — "We're focused on loving her," Spear says of EmmaRose. They talk through plans for tests, insurance concerns, communicating with doctors closer to home. Fox advises Spear to always ask for the best phlebotomists to draw EmmaRose's blood.
Then she tells the family that she'll see them again soon.
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Twelve-year-old Liam Derbyshire has been beating the odds - and cheating death - for his entire life.
When he was an infant, doctors told Liam’s parents that the boy probably wouldn’t make it past six weeks because he was born with a rare condition called central hypoventilation, which makes it impossible for him to draw a breath automatically. That means that when he nods off, he could stop breathing.
So, each night Liam’s parents hook him up to a respirator that breathes for him once he drops off to sleep.
“You go from having a child who you believe to be normal when he is born to suddenly realizing that he has quite a catastrophic condition,” his mother, Kim Derbyshire, told TODAY.
The colloquial name for the condition, Ondine’s Curse, derives from a fairy tale in which the water nymph Ondine bewitched an unfaithful lover. He had sworn that his every waking breath would be a testimony of his love. When she learned of his unfaithfulness, she cast a spell that would make him forget to breathe if he fell asleep. When he eventually fell asleep out of exhaustion, his breathing stopped.
For Liam’s parents, the worry isn’t limited to nighttime. They have to watch him constantly to make sure he doesn’t get tired and nod off in a nap. When they go for a drive, Kim has to keep her eyes on the road – and on her son.
Liam has a permanent tracheostomy tube in his neck – which is where the ventilator plugs in at night. The family has spent thousands of dollars on electric bills and on the emergency equipment that will keep the ventilator running in case of a power failure.
Liam’s medical problems aren’t limited to his breathing condition. He’s also had to battle cancer and a bowel disease in his twelve short years.
But in spite of what he has been through, his family says Liam has "exceeded all expectations." As Kim told the Daily Mail: "Every day the doctors are amazed at how fit he is. He has defied all the odds. We have been very fortunate with Liam that he has had the life that he's got. We always wanted him to have as normal a life as we could give him."
His family tries to enjoy every day with Liam, who has a passion for trains and hopes to be a train conductor when he grows up. Every Christmas, Kim says, is a bonus.
"He is so full of life, he's fantastic. He's constantly smiling and laughing. He's very affectionate. He has all the normal traits of a lot of kids," Kim told the Daily Mail.
“If it were going to happen to anyone,” Kim adds, “he’s the best person for it to happen to because he’s just gone with it."
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The woman mumbled and ran a shaking hand through her dark mass of tangled curls. Her husband could barely make out what she was saying over the din of the emergency room at the John Muir Medical Center in Walnut Creek, Calif. “Rewind it,” she said, raising her voice, looking at her husband. “Rewind it,” she pleaded. Her husband squeezed her hand and forced a smile. Over the last four months she often repeated this phrase when she was confused. He wasn’t sure what she meant, but he wished they could rewind their lives and return to the way they were half a year earlier, before his previously healthy 64-year-old wife became sick.
It all started one day when his wife suddenly felt dizzy. She was fine lying flat, but the room spun wildly whenever she tried to sit up. After a day or two, the dizziness became a terrible prelude to waves of nausea and uncontrollable vomiting. But it wasn’t just her stomach: by the end of the week she could barely stand up — her whole body felt weak and off balance. Then she started seeing double. That’s when she went to the hospital. She was in and out many times since then, but she hadn’t improved.
Dr. Robert Chance Algar, the neurologist who cared for this patient in the months after she fell ill, was startled by how much worse she looked than when he saw her three weeks earlier. She had lost a lot of weight. Her eyes were sunken; her skin was sallow. She could not walk at all. Despite his best efforts, his patient was clearly getting worse.
The patient’s husband explained that she hadn’t been able to hold anything down for several days: even water came right back up. That morning she became confused, and he knew from experience that that meant she was dehydrated. He took her to the E.R. and then called Algar.
As Algar spoke with the patient, he realized that she didn’t know she was in the hospital. Her eyes did not move in unison — causing the double vision. And her irises jerked back and forth whenever she looked up or to the side — a condition known as nystagmus. Her speech was slurred. And Algar (who is my nephew by marriage) was struck by the odd, uncoordinated way in which she moved her arms and legs. When he tapped her knee and ankle with a reflex hammer, the usual brisk jerk was missing.
When she was first admitted to the hospital months before, her doctors thought she had suffered a stroke. A CT scan and an M.R.I. showed otherwise. They wondered if she had an infection. It seemed unlikely: her white-cell count was normal, and a spinal tap showed no signs of meningitis or encephalitis. There was, however, one clue in the spinal fluid: the liquid contained an abnormally high amount of protein. Algar focused on that: her symptoms, coupled with the high protein, matched a pattern he recognized for Guillain-Barré syndrome. Guillain-Barré occurs when the immune system mistakenly attacks the nerves as they run from outside the brain and spinal cord to various parts of the body. People with this illness usually have a paralysis that starts in the legs and moves up the body, but in one variant, the paralysis can start in the eye muscles.
At the time, Algar ordered a blood test to look for proof of the disease, but he knew it would take weeks to get the results, and this patient was too sick to wait. He decided to begin treating her before the results of the test came in. If she got better, he would know he had the right diagnosis.
The problem with treating an illness before it is confirmed through testing is that the patient can worsen while being treated for a disease she doesn’t have. And this patient was far too sick to risk wasting time. So Algar also sent off blood to look for H.I.V. or Lyme disease — two common infections known to cause unusual neurological symptoms. And he ordered another M.R.I. of the brain to look for signs of anything else he might have missed.
The patient began her treatment, and she seemed to get better at first. The double vision vanished; the coarse tremor that accompanied her every movement diminished; and her speech improved. But she was still vomiting four or five times a day, she was still losing weight and she still couldn’t walk. Even before the test came back negative (as it did several weeks later), it was clear that she didn’t have Guillain-Barré.
Now that his patient was back in the hospital, Algar went over her chart once more. Whatever it was, it wasn’t going to be one of the usual suspects. Could it be an unexpected type of infection? Algar sent off blood and spinal fluid looking for a dozen or so rare infections. Could it be an autoimmune disease like lupus? He ordered tests to look for these diseases.
He finally found something that he thought might be useful. Two months before her symptoms started, the patient had an operation. According to the hospital notes, she had a pelvic mass. It turned out to be a fibroid — a benign tumor of the uterus — but in the operating room, the surgeon noted a small irregularity on the surface of her left ovary. He biopsied the tissue, but the pathologist couldn’t see anything in the tiny sample. This additional history, however, provided Algar with another clue: most cancers trigger the immune system to create antibodies that target and destroy cancer cells. Sometimes, especially in cancers of the ovaries or breasts, these antibodies can attack cells in the brain as well, a phenomenon known as paraneoplastic syndrome. This injury to the brain can produce dizziness, double vision, vomiting and a severe loss of coordination.
Algar quickly sent off the test to look for the antibodies. It took almost two weeks, but the result finally came back — positive. So the patient clearly had a cancer; the question was where. A CT scan of the chest, abdomen and pelvis did not reveal any sign of cancer. Algar was disappointed but not surprised: this paraneoplastic syndrome often shows up long before there are any other signs of disease. But what if the abnormality the surgeon saw on her ovary during her prior surgery was the first blush of cancer?
If so, she should have her ovaries removed even though there was no sign of cancer. But would the patient be willing to take this risk? Her answer was an immediate yes. If there was even a small chance that an operation would bring an end to her four-month ordeal, it was a chance worth taking.
The surgery was scheduled for that week. Afterward, the surgeon visited the patient’s husband in the waiting room to break some bad news. He had seen no sign of cancer in the tissue he removed. Although the final answer would come from the pathologist, the surgeon was not optimistic. The patient’s husband fought back tears. He had watched his wife suffer for so long, and there still seemed to be no end in sight.
The pathologist’s report came the next day. A nine-millimeter tumor was found in her left ovary. Seeing this, Algar felt a flood of relief. He had recommended the surgery on a hunch — a well-grounded hunch — but he had no way of knowing whether a tumor would be found.
It is strange to welcome a diagnosis of ovarian cancer, and yet Algar, the patient and her family knew it provided a long-needed answer. A second surgery found additional cancer in a lymph node and, once the patient awoke from this operation, the nausea and dizziness lessened significantly.
That was three years ago. Since then the patient has struggled to relearn the basics — how to walk, how to talk. But she doesn’t have ovarian cancer, and she’s slowly getting better. And for this patient and her family, that’s enough for now.
Lisa Sanders is the author of “Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis.”
If you have a solved case to share with Dr. Sanders, you can e-mail her at lisa.sandersmd@gmail.com
She is unable to respond to all e-mail messages.
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Despite rare condition, she has written a book and wants to inspire others!
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It’s not easy to go through life leading a parade of people staring at you, whispering behind your back and wondering what’s wrong with you when from your standpoint, nothing is wrong at all.
But that’s how it’s always been for Lizzie Velasquez, a bright and bubbly college student with a rare disorder that makes it impossible for her to gain weight, no matter how much she eats.
“They look at me like I’m a monster. Wherever I go, it’s like I walk with an audience because people are constantly looking at me,” Velasquez, 21, told TODAY’s Ann Curry Tuesday in New York.
Rare condition
Velasquez was just 2 pounds when she was born about eight weeks premature. She grew slowly and has no body fat, so that today she weighs a mere 61 pounds — about as much as an average 8-year-old.
Doctors say she has many symptoms of neonatal progeroid syndrome. One of just three to six people in the entire world with her specific symptoms, Velasquez has a triangular face and a sharp, beaklike nose. She also has lost vision in her right eye.
But none of that has stopped her from becoming a student at Texas State University in her hometown of Austin, hanging with her friends, and living a normal life. In fact, it’s spurred her on to become a motivational speaker and to write a book, “Lizzie Beautiful: The Lizzie Velasquez Story,” which is being released later this month.
“Every single day my mission is to get my story out there. People need to know that no matter what you look like or what you go through in your life, you don’t need to be judged because of your outer appearance, and you don’t need to let that stop you.
You don’t need to let the negativity hold you back or keep you from living the life you want,” Velasquez said as her parents looked at her with pride.
Lizzie Velasquez appeared on TODAY with her father, Lupe, and mother, Rita.
Staying positive
Obviously, she said, it hurts to be stared at and to read online comments from people accusing her of being anorexic when she actually eats some 5,000 calories a day.
“I’m human. So, of course, some of the negativity is going to hurt and it’s going to upset me,” Velasquez said. “But my dad always tells me I could only have my one sad cry and then you have to move on and look at the positive side of things. I have to give all of that credit to my parents, and to my family, because they raised me as if I was nothing different. When I actually learned from the outside world that, yes, you are different, my mind-set is still, ‘You’re normal.”
PRE-ORDER YOUR COPY NOW
Lizzie Beautiful: The Lizzie Velasquez Story.
Due out late July 2010. Get on the waiting list for Lizzie's book by emailing us at: motah@motah.us We will contact you when the book is online for sale.
Lizzie shares intimate details about her struggles of living in a society that places great emphasis on outer appearance. Also read never-before-seen journal entries Lizzie's mother wrote to Lizzie as a child. Lizzie gives you reasons to find hope and faith that can be infused into everything you do, so that you - too - can achieve your dreams.
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CBS) Tommy McHugh doesn't paint because he wants to. He paints because he can't stop.
But Flaherty said she has seen similar cases and, "They all get more emotional. Of the other patients I know, some of them had interest in art or in music before and some of them clearly didn't and had to learn it as they go. But all of them became me emotional."
One of Tommy McHugh's paintings.
(www.tommymchugh.com)
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An archaeological worker looks on as the linen-wrapped mummy
of King Tut is removed from its stone sarcophagus in its underground
tomb in the famed Valley of the Kings in Luxor, Egypt. Using a new
approach for analyzing mummies called molecular Egyptology, an
international team of researchers found DNA traces of malaria parasites
in the boy king's brain, suggesting an infection was a major factor in
his death.
(Ben
Curtis / Associated Press)
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For eight years, Kelly Klodzinski has lived through a medical hell. Her jaw clenches so tightly that she can’t eat a peanut butter sandwich; she has an inflamed heart that often makes it difficult to breathe, much less walk; and she spends so much time in hospital beds that she’s on a first-name basis with staff at seven or eight clinics.
Thankfully, though, Klodzinski is now part of a groundbreaking new program: At a clinic in Bethesda, Md., she is examined by some of the leading minds in medicine, who aren’t rushed because they only see three or four patients a week. And the charge to Klodzinski for such acute care? Not one red cent.
There is a catch, however: Patients like Kelly have to be sick, really sick, to be admitted. And what’s more, those patients have already had to suffer through years of medical maladies that don’t even have a name.That’s the mission of the Undiagnosed Diseases Program, created by the National Institutes of Health in May 2008. And even though it sounds a bit like the medical-mystery TV show “House,” the doctors caution their work can’t be tied into a neat bow in the space of a one-hour episode.
Mysterious symptoms
Still,
for Klodzinski, being treated at the UDP clinic is the first light of
hope she’s seen after eight years of medical darkness. The young
Louisiana wife — focus of the first of a two-part series examining
medical mysteries on TODAY — has seen her body steadily break down in
many ways, with doctors unable even to give her a diagnosis, much less
cure her.
Appearing live on TODAY Thursday, Klodzinski told Matt Lauer she feels like a medical orphan: Concerned friends don’t understand that she suffers from maladies that have no name.
“It’s very, very frustrating,” she told Lauer. “People ask me every day, ‘What’s wrong with you, what do you have?’ And I don’t have an answer; I just tell them it’s undiagnosed. And they will say, ‘Well, what do they call it?’ And I say, ‘I don’t know, they’ve don’t have anything TO call it.’ ”
Klodzinski’s health began deteriorating at age 15, when a small sore in her mouth grew so large it made it impossible to open her jaw more than a fraction of an inch. It was followed by serious but seemingly unrelated health issues: inflammation in her heart that left her struggling to walk, nodules forming on her lungs and an enlargement of her right kidney.
She’s been in and out of hospitals ever since, and she sometimes has as many as four doctor’s appointments in a week. She’s been looked at by pulmonologists, cardiologists, hematologists and oncologists. Klodzinski has undergone multiple surgeries, one of which she barely survived. But all the while, well-trained doctors have been unable to pinpoint the root cause of her health dilemma.
Now, with treatment at the UDP clinic, Klodzinski told TODAY she can finally see some progress in turning her health crisis around, even if she’s been down the road with doctors too many times to be totally confident.
“It would be a pretty big deal to get a diagnosis after eight years,” she said. “I would be in shock if [they] told me, ‘This is what you have.’ If I could just get some treatment options, how to keep it under control, how to keep it from flaring up again, that would be great.”
Not like ‘House’
The
novel program undertaken by NIH can be called forward-thinking; just
don’t call it “House” in the presence of Dr. William A. Gahl, one of
its founders. “That’s entertainment — we’re not here for entertainment
in any respect,” Gahl told TODAY. “That program essentially solves that
problem, that story, within an hour. The whole premise is completely
unrealistic and completely off track, and it’s intended to be drama. I
think also, someone who has Dr. House’s personality characteristics
would never be permitted to handle patients or would have his license
taken away.”Klodzinski told TODAY she knows she’s in better hands with the experts
at the UDP clinic, and counts herself lucky she was accepted into the
program. Since opening, the clinic has sifted through some 2,100
inquiries and accepted only 140 patients thus far.Klodzinski feared she wouldn’t be accepted,
believing “there were probably a lot weirder cases,” but says she feels
like she’s finally found the right place for treatment.
“It’s weird because it’s like, ‘Do I really have the disease that nobody knows what it is?’ Klodzinski told TODAY. “I go to the hospital and there are so many sick people there and they all know what’s wrong with them. What’s so weird about my condition that they don’t know what it is or what doctor to send me to?”
Unrelated ailments
Gahl
said the intriguing mystery with Klodzinski is that she suffers from
multiple maladies, with one not necessarily being related to the other.
She shows signs of ascites (free fluid in her abdomen), pericarditis
(inflammation of her heart covering) and hydroneophrosis (enlargement
of her kidney), along with mouth cysts that cause her jaw to become
inflamed.
“It’s possible [she] has a genetic disorder,” Gahl said, and if “we could find the gene that is responsible and relate mutations in that gene to her symptomatology, [it would be] a great outcome for us and for the profession, too.”
Another one of Klodzinski’s physicians at UDP, pulmonologist Dr. Bernadette Gochuico, said, “Kelly is very unusual, and she’s challenging. We are doing some detective work in that Kelly has something that has not been described before, and we’re trying to identify for the first time what may be causing her disease.”
Klodzinski told Lauer she’s taken steroids and morphine for years, but the UDP clinic has put her on a new drug normally used to treat rheumatoid arthritis, lupus and malaria. She began taking the drug in December, and is due back at the clinic in March to see if it’s helping.
Symptoms first, diagnosis later
Appearing
with Klodzinski on TODAY, medical correspondent Dr. Nancy Snyderman
says it is good medicine to try to make Kelly feel better first, then
figure out the root cause for all that ails her. “When a patient has
real symptoms, sometimes doctors are better off to treat the symptoms,
then wait for the diagnosis,” she said.
Snyderman also lauded the NIH program for bringing together experts from various fields. “Not everything fits into a neat package; sometimes Mother Nature has a sort of different plan, and the constellation of symptoms don’t fall into one package,” she said.Klodzinski told TODAY her spirits are somewhat buoyed by visiting the UDP clinic, but she still has her dark days. Recurrence of severe symptoms forced her into a hospital bed last year and made her have to plan her wedding while lying on her back.
“It’s kind of scary,” she said, “especially when it first started happening. I’m never really happy that I have to take steroids to live, basically. I don’t like knowing that without a little pill every day there’s a possibility I might die. I feel pretty helpless, and it is hard knowing that no one has really gone through the same disease process as I have.”
Still, getting accepted into the UDP clinic allows her to see doctors she would never have been able to afford otherwise. “I don’t have insurance; we don’t have the money to fly around the world,” she explained. “When I found out someone was interested in finding out what was wrong with me, I was so excited.”
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