He gets to live on: NICU parents

Phillip Rock was born to Denise and Charlie Rock in 2001, 15 weeks prematurely. His life lasted only two days.

A year later, Denise conceived again, and again gave birth early. During Leighton Rock’s 35-day stay in the neonatal intensive care unit (NICU), Denise and Charlie met several other parents of preemies, who could give moral support.

Three years later, Denise gave birth to another premature baby girl, Emerson, now a toddler.

The March of Dimes has started a program to formally provide support to parents of preemies. The March of Dimes NICU Family Support Program also includes an online community at ShareYourStory.org where members who have already experienced preterm labor can share information with those who have not.

Now Denise volunteers at the program’s chapter office at St. Luke’s Hospital in Kansas City, Missouri, near home in Shawnee, Kansas. "Losing a child is the worst thing that has happened in my life," she says. "There are not very many parents [who have lost a child] who get to talk about their child all the time. I say Phillip’s name every day. He gets to live on even though he’s not here….After Phillip died, I vowed not to let his birth and death be for nothing. So even if I help just one person, his life had a purpose."

Advice: Vow to carry on your family member’s spirit.

Read another of our stories about a mother patient advocate, or read Leah Ingram’s source story in the June 2007 issue of Continental.com magazine.

I get bottles at a time: Abuse of Adderall for ADHD

"Todd" is a senior at Needham High School, outside of Boston. He has been diagnosed with Attention Deficit Disorder (ADD, or ADHD) by a psychiatrist and regularly takes Adderall to help him focus. His friends have often asked him for a tablet or two before SATs, tests, or just for focusing on homework.

"I get bottles at a time so I can afford to give it out, but I don’t like to. People ask me because they feel really overloaded with work and feel like they need the extra push to keep up. They’ll pay me or even do me favors to get it. I could name at least ten people who took Adderall to get better scores and they got it easily from friends."

Another senior commented, "I have a friend who gets prescribed Adderall and doesn’t even take it; he only sells it. He sells each pill for five or ten bucks."

About 5% of the American population has ADD, according to the ADD Association, and Adderall is widely used. It may well be abused in many other neighborhoods with highly competitive high schools.

Advice: We need to come back down to Earth and be more understanding of human flaws, say Becca Pryor and Sarah Kristeller, and create a healthier competition among our kids.

Read another of our ADHD stories, or read the source story by Becca Pryor and Sarah Kristeller in the May/June issue of The Hilltopper.

Her leg has healed but his conscience hasn’t: Misdiagnosed broken foot

Here’s a father’s story:

Fatherhood also comes with tears and feelings of emptiness or stupidity. I almost rushed Lucille to the hospital for her uncontrollable cry … a cry that ended when my wife came home and gave her food instead of the bottle of water I had been supplying.



Nothing comes close to the time when Caroline’s broken foot was misdiagnosed as a sprained ankle. The doctor advised me to help her try walking with the leg.

 A week or so later, the leg was swollen and had excruciating pain. I sought for a second opinion. The leg had been broken. Caroline cried, and I cried.

 Her leg has healed sufficiently, for which I am eternally grateful.

I wish I could say the same thing for the hurt I have suffered for helping her walk on a broken leg.


Advice: Only hindsight is 20-20. If you make a mistake, remember that you can only prevent what you can predict. Forgive yourself.

Read a father patient advocate story, or read the Argus Observer’s
source story.

Father’s Day [pain medication]

Happy Father’s Day!

My father passed away three months ago after a long and full life, ending with a very long, uncomplaining fight against Parkinson’s Disease.

He was lucky enough to rarely suffer from pain. Once, years ago, he had developed a kidney stone. The pain is said to be as acute as the pain of childbirth. He lay awake in pain before telling my mother, and then dodged her question about how he was feeling. The stone eventually passed. I doubt he took any pain medicine.

The stoic acceptance of pain may be admirable. Or it may be misguided, as pain itself can be harmful. Pain can release hormones that stress the heart and lungs. Pain can cause blood pressure to spike, leading to heart attacks and strokes.

Now, of course, a variety of pain meds are now available, and often, their benefits outweigh their risks. Be sure to consider the trade-offs: every year, 5,000 – 6,000 Americans die from gastrointestinal bleeding from drugs like ibuprofen or aspirin, according to an article in the American Journal of Gastroenterology.

Advice to those in chronic pain: consult your doctor if the pain limits your activities, and discuss the trade-offs.

Read one of our pain management stories, or read Tina Rosenberg’s nuanced story about pain, addiction to opioids, and the role of doctors and patients in treating pain, in today’s New York Times Magazine.

They can receive the proper treatment: Lewy Body diagnosis

The Guest of Honour at the fund-raiser was octogenarian actress Miss June Brown, also known as Dot on the popular BBC 1 television soap, EastEnders. She said, "Alzheimer's is not the only dementia," as her late husband, the actor Bob Arnold, died of Lewy Body Disease in 2003. "It is important for people, especially doctors, to know about Lewy Body Disease so that fewer people are misdiagnosed and so they can receive the proper treatment."

Lewy Body disease, also known as Dementia with Lewy bodies (DLB),
Is Europe’s second most common form of age-related dementia. Between 120,000 - 130,000 people in the United Kingdom are thought to suffer from this terrible neurodegenerative disease.

Lewy bodies, first identified by Dr. Friedrich Lewy in 1912, are microscopic protein deposits found in the brain. Their presence disrupts the brain's normal functioning, causing progressive mental and motor dysfunction.

Because DLB shares common characteristics with both Alzheimer's and Parkinson's Diseases, it is often misdiagnosed. Accurate and early diagnosis is crucial because administering the wrong drugs can have extremely adverse and even fatal consequences.

The Lewy Body Society's President and Chairman of its Medical and Scientific Advisory Panel is Professor Ian McKeith of Newcastle University, who is acknowledged as the world's leading expert in DLB , having published more than 200 peer-reviewed papers on the subject.

"Virtually unrecognised 20 years ago, DLB could within this decade be one of the most treatable neurodegenerative disorders of late life," said Prof McKeith. "The first goal must be to raise awareness."

Advice for those with a family member with dementia: Consider whether Lewy Body disease could be a diagnosis.

Read another of our neurology diagnosis stories, or read the source story in Medical News today.

They need lots more than six cigars: Multiple births from fertility treatment

Less than a day apart, women from Arizona and Minnesota gave birth to a total of 12 babies. Two sets of sextuplets were born, one on Sunday in Minnesota to Ryan and Brianna Morrison and the other one on Monday in Phoenix to Bryan and Jenny Masche. The Masche babies were born at 30 weeks. The Morrison children were born at only 22 weeks.

One of the Morrison sextuplets died Thursday. His siblings' chances of survival are low. The future health of all of these babies is a big question mark.

"We'll be lucky, really lucky," said local fertility specialist Dr. Scot Hutchison, "if several of these children don't have to have long-term special care. The risk of cerebral palsy and learning disability is four times more likely for twins than for single babies. For triplets, it's eight times more likely. And so it's really an exponential thing when you get out to six babies."

And that's after the millions of dollars in intensive care unit charges the dozen premature babies are likely to run up, said Dr. Hutchison, director of the division of reproductive endocrinology and infertility at the University of Arizona.

Pregnancies such as these are dangerous for everyone, including the mother. Jenny Masche could have died Monday: several hours after the Caesarean delivery, she suffered acute heart failure because of the extra blood in her body.

The Masche family has health insurance to cover most of the cost, but expenses like this drive up premiums for everyone. The Masches have set up a Web site on which they are soliciting donations ranging from diapers to a vehicle large enough for two adults and six babies with car seats. A church sponsored a diaper drive and collected 22,000 diapers for them. It probably won't be enough. "This couple will exhaust all of their resources, and after a few months, when no one thinks it's interesting or cute anymore, they'll be left trying to struggle through," Dr. Hutchison said.

The number of American babies born in higher order births - triplets or more - more than quadrupled from 1971 to 1995, mostly because of fertility treatments, according to a National Center for Health Statistics report.

Fertility treatment is not an exact science. But there are things responsible practitioners can do to reduce the chance of multiple births, from limiting the number of embryos implanted in an in vitro procedure to the choice of fertility drug regimen to halting a cycle.

Dr. Hutchison said he considers twins an acceptable complication and triplets a failure. Years ago, his practice produced one set of quadruplets, which made him re-examine how aggressive he wanted to be with treatment.

Our best wishes for the Masches and the Morrisons.

Advice to women seeking fertility treatment: Ask not only about a clinic's success at births - not pregnancies- and also about what it can do to reduce their chance of having multiples. "The goal has to be healthy baby, healthy mother, and it should be one baby at a time," says Dr. Hutchinson.

Read another of our stories of too much of a good thing, or read Anne Denogean’s source story.

A tool for patients and advocates: Hospital error rates

A new publicly available resource shows individual hospitals’ quality ratings, so you can identify the best hospital near you. The U.S. Centers for Medicare and Medicaid Services gathers the information from hospitals across the country and posts it here. The database shows graphs on the treatment of patients with heart conditions and pneumonia, and those undergoing surgery.

Advice: When it’s not raining the roof doesn’t leak, and when it’s raining, it’s too late to go and fix the roof. That’s especially true for personal health issues. That’s why you should take a few minutes now, and pick out the best hospital nearby. That way, in an emergency, you’ll know where to go.

Public Policy Minute: Hopefully, the public availability of quality measures will stimulate hospital leaders to compete on quality. Paul Levy, the head of Beth Israel Deaconess Medical Center in Boston, hopes so, and has posted many measures on a new BIDMC web site. Beth Israel shows up among the top hospitals on all but three of the 21 measures that can be viewed on the CMS database, among its 12 neighboring hospitals. Bravo, Paul!


Not all quality contests are as fair and accurate as CMS’. Read a story of a medical error by a physician who won an award that was not carefully made, or read Paul Levy’s blog post on the public posting of BIDMC’s quality measures.

Something women themselves can do: Avoiding ovarian cancer misdiagnosis

The mother of a friend died years ago from ovarian cancer, so the good news to be formally announced on June 25 about its early detection hits close to home.

Dr. Barbara Goff and her colleagues found that one-third of women with ovarian cancer had initially received a misdiagnosis, e.g., of depression, menopause, irritable bowel syndrome, or "growing old." She said, "12% were told there was nothing wrong with them, and it was all in their heads."

“There are so many horror stories of doctors who have told women to ignore these symptoms or have even belittled them on top of that,” said a co-author, Dr. Debbie Saslow.

Ovarian cancer can grow and spread quickly, so even a few months’ head start in getting the diagnosis can be vital.

"This is something that women themselves can do," said Dr. Carol Brown of Memorial Sloan Kettering Cancer Center, "and we can familiarize clinicians with, to help make the diagnosis earlier."

Advice to women: If over the last 2 - 3 weeks you have experienced near-daily bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly and feeling a frequent or urgent need to urinate, see a gynecologist, especially if this is new and different from your normal state of health.

Please help us spread the upcoming announcement by the Gynecological Cancer Foundation, the Society of Gynecologic Oncologists, and the American Cancer Society, by forwarding this to your friends.

Read another of our delayed diagnosis stories, or read Denise Grady’s source story in today’s New York Times.

Drink some water and drive on, soldier: A veteran’s misdiagnosis

A Utah man is striving to live a full and rewarding life in the U.S. military after he was misdiagnosed with a condition that eventually led to the removal of part of his intestine.



Staff Sgt. Mark Taylor started experiencing abdominal pain that he did not receive on the battlefield.
 
He decided to get a colonoscopy to see if that would diagnose his problem, and had it done at a military hospital. The military doctor’s diagnosis: irritable bowel syndrome.

 "'Drink some water and drive on, soldier...'--that was their attitude about it," he says.



He followed his doctor’s orders and deployed to Germany and Kosovo. As a member of the reserves, Mark later discovered that his pain was getting worse. It turns out that he did not have irritable bowel syndrome. He had a more serious condition: ulcerative colitis. "
“By the time that I found out exactly what it was, my illness had progressed so far that it was pretty much incurable at that time," he said.
 
Having gone so long untreated, his condition had progressed to the point that surgeons had no other choice but to remove his entire colon. This sudden and dangerous turn put Mark in a fight for his life.

 As if ulcerative colitis wasn’t bad enough, doctors also diagnosed him with bacterial meningitis.

 "When you have a doctor tell you they don’t think they’re going to live…that’s really scary," said his wife, Jennifer. 

She knew that her husband was no quitter and that he would fight to survive.



Mark recovered and eventually decided to re-enter the military. 
"I really wanted to go back and take care of soldiers," he said.



Unearned suffering can be redemptive, as Dr. Martin Luther King, Jr. said. It is for Mark.

Advice to victims of medical error: Teach and help others after you learn from your suffering.

Read another of our veterans’ stories, or read the source story by Nicole Hunter and Doug Ware.

Keep it inside the locker room: FDA drug safety reviews

Congressional investigators and the New York Times have identified at least five reviewers at the Food and Drug Administration (FDA) who have recently been disciplined for uncovering evidence about the dangers of certain popular drugs. They include: Dr. Rosemary Johann-Liang, for her investigation of the diabetes drug Avandia; Dr. Andrew Mosholder over anti-depressants; Dr. David Ross over the antibiotic Ketek; and Dr. Victoria Hampshire over her review of heartworm medicines with fatal effects on more than 500 dogs.

Dr. Hampshire describes a "feeling of fear" among reviewers at the FDA. The FDA Commissioner, Andrew C. von Eschenbach, has urged the safety officials to keep disagreements "inside the locker room," and said those who discussed findings with outsiders would be "traded from the team." Indeed, Dr. Hampshire’s work in uncovering the dangers of heartworm medicine led to her being disciplined and being made the subject of a criminal investigation.

Secrecy by the FDA blocks patients from empowering themselves. And if the FDA does not adequately guard us from dangerous drugs, we have to be more vigilant.

Advice: If you’re prescribed Ketek or Avandia, ask your doctor about adverse reactions. Ask your vet about adverse drug reactions from your dog’s heartworm medicine.

Read another of our Avandia stories, or read Gardiner Harris’ source story in today’s New York Times, "Potentially Incompatible Goals at FDA."

Thank God she did: Night shift in the hospital’s intensive care unit

Melinda Henneberger tells the story of her recovery from breast cancer surgery:

My husband wanted to come with me, but I finally persuaded him to stay home, thinking how much scarier it would be for our two kids if we were both gone. But my best friend, Mary, did fly in from Oregon and thank God she did. I was on the table for 12 hours and when I came out, they put me on a morphine drip. Nauseated, I’d start to vomit, then choke. I was thirstier than I’d ever been, but I couldn’t drink anything. Mary was there to feed me ice chips and hold me up when I choked. A few times, we pushed the button for help, but no one responded for quite a while Sometimes they never came at all. If I’d been on my own and choking, I’m not sure how I would have made it through the night.

The night shift staffers were kind and caring, but appeared to be overwhelmed by patients needing attention. I could hear other patients crying out for help that didn’t seem to come. It was horrible listening to them.

Later in the week, when I was able to move around, I fed ice chips to another patient. I stayed up all night with them. It took me half an hour just to get across the room. I was still in a great deal of pain and moving pretty slowly.

The whole thing was Dante-esque.

A spokesperson for the medical center says the hospital assigns one nurse for at least every two patients in the ICU, both night and day.

Melinda’s advice to people having inpatient surgery: By all means, get somebody to stay with you through the night.

Read another of our night stories, or read Max Alexander’s source story in the June 2007 Readers Digest.

Prime time for medical error: The doctor’s daughter in the night shift

Seven-year-old Jacquelyn Ley was in the hospital for surgery for her shattered elbow. After surgery, night nurses gave her morphine via a pump, inadvertently setting the dose much too high. Luckily, her mother was there, spending the night in her daughter’s room. She noticed that Jacquelyn was barely breathing, and could have died.

Jacquelyn was lucky because her mother was there and because she knew her stuff: Dr. Carol Ley is Chairman of the Board of the University of Minnesota Medical Center and director of occupational medicine at 3M Company. Dr. Ley says, "the night shift, with its hand-offs and staffing issues, is prime time for medical error."

Advice: Get a patient advocate to be with you in the hospital.

Read another of our night-time stories, or read Max Alexander’s source story in the June 2007 Readers Digest.

The pharmacist-daughter’s mantra: Drug side effects in the elderly

Phylliss Hunt Moret’s story:

Being my parents’ primary caregiver had never crossed my mind until a critical event six years ago when my dad fell and broke his hip a week prior to my mom’s shoulder surgery. Diabetes, high blood pressure, and heart disease evolved to heart attacks, strokes, an amputation, cognitive decline, and 12+ daily medications each.

Our country "gets it" that babies and toddlers can’t take the same drugs as adults. But seniors have their own unique medication-related challenges. As a pharmacist committed to seniors’ care, I know the mantra by heart: All symptoms in a senior should be considered a drug side-effect until proven otherwise.

A common scenario: A senior gets a new prescription to treat something, say depression. Then a new symptom presents itself: confusion. The senior gets another prescription to treat the confusion, when all along the confusion was a side effect of the medicine used to treat the depression.

Why does this happen? Because seniors are at greater risk for medication-related problems due to multiple illnesses, multiple physicians, multiple medications, and multiple pharmacies.

Because studies repeatedly show that one in five seniors takes at least one medication considered potentially inappropriate, when instead there are alternatives with less risky side effects for seniors.

And because medication-related problems all too often look like common geriatric problems an d syndromes, e.g., confusion, depression, insomnia, tremors, incontinence, weakness, loss of appetite, fainting, loss of balance, falls, and more.

Because there is a scarcity of expertise among health care professionals about geriatric pharmacotherapy and the unique medication-related needs of seniors. Which means that too few health professionals know the mantra….

Advice to people with elderly parents or spouses: Remember Phyliss’ mantra: All symptoms in a senior should be considered a drug side effect until proven otherwise.

Read another of our drug-drug interaction stories, or learn more about medications that are potentially inappropriate for your parents.

He should not be allowed to harm anyone else: Drug study and schizophrenia

Susan Endersbe battled depression her whole life. When her illness worsened, she would check into a hospital. When she did so at age 40 in May 1994, doctors at the Minnesota hospital gave her an anti-depressant, and three weeks later she said she was ready to leave soon.

The next day she was referred to a doctor who enrolled her in a drug study he was paid to conduct, though her suicidal tendencies should have excluded her. He stopped giving her the anti-depressant, and then she had to wait two weeks before getting an experimental drug or placebo.

During those two weeks, the doctor recorded her adverse effects as "0," though nurses documented a steady decline. Susan expressed reservations about being part of a drug study, telling a hospital worker, "I guess I didn’t understand that I would be going off all my other medications."

She spoke repeatedly of killing herself. But on June 10 the doctor wrote that she was "medically improving," and cleared her to visit her apartment alone, though leaving the hospital violated the study’s rules and she had mentioned suicide the night before.

She walked home, and committed suicide the next day.

Her brother learned that the doctor has since been receiving money from drug companies, overseeing clinical trials. Stunned to hear this, he said, "He should not be allowed to harm anyone else."

Indeed, this doctor, and many others in Minnesota, had received money to conduct drug studies even after formal disciplinary efforts by the state board of medicine.

Advice: In considering your participation in a drug study, find out whether you can keep taking your other medicines.

Read another story on this topic, or read the source story in Sunday’s New York Times.

He was a forward observer: An Agent Orange victim and plaintiff

Stephen Zardis was born in Malden, Massachusetts, and attended Boston College for two years. Then he enlisted in the U.S. Army, and served in 1968-69 as a forward observer near Cambodia in an area saturated with Agent Orange, the chemical used to destroy the jungle plants that concealed the Viet Cong.

Several years after his honorable discharge, he was diagnosed with atypical multiple sclerosis. Other Vietnam vets told him of their strange and rare health problems. His research convinced him Agent Orange was to blame. He became the director of the Massachusetts chapter of Agent Orange Victims International, spreading the word about the origin of the veterans’ health problems, and helping ailing veterans find answers and restitution. He became the lead plaintiff in the class action lawsuit filed in Federal District Court in Boston in 1979. The class won a settlement in 1984.

His health continued to deteriorate, and he passed away on Thursday, at age 59.

"I've learned through my own medical history that I can’t take it with me. So I wanted to do something with it, something that would have a meaning and a purpose," he said in 2003, explaining why he had donated $1 million to his alma mater, Cathedral High School in Boston’s South End.

Advice to victims: Find other members of your class, and learn and advocate with them.

Read another of our patient advocate activist stories, or read Tom Long’s obituary on Stephen in Tuesday’s Boston Globe.

A long and rocky course of recovery: Gastric bypass surgical error lawsuit

Mary Larson was very overweight, and had gastric bypass surgery to reduce her appetite. The surgery itself went well.

But after the operation, the connection linkng the small intestine to the pouch created to limit food intake (the anastomosis) began to leak.

Eight days after the surgery, she was in critical condition. The same surgeon performed emergency surgery, and irrigated and cleaned the area, but did not repair the leak. The surgeon then transferred her to a long-term care facility without a plan to follow her or have another surgeon follow up on her progress. Later transferred to another hospital, she underwent several more operations and endured a long and rocky course of recovery.

She filed a lawsuit, saying the surgeon failed to diagnose and treat the leak and the resulting peritonitis, despite her "constellation of symptoms." They asked the judge to add the medical center as a defendant, saying it had granted privileges to the surgeon though he lacked appropriate training and board certification, and had a history of malpractice claims and restrictions on his practice. The question of whether the medical center was negligent in credentialing the surgeon has reached the Minnesota Supreme Court. Meanwhile, Mary has been recovering.

Advice: Check out the experience and qualifications of your doctor.

Read another of our gastric bypass stories, or read Wayne Guglielmo’s source story in the May 4 issue of Medical Economics.

Like father, unlike son: Athletes and undiagnosed heart conditions

Boston Celtics star Reggie Lewis. Loyola Marymount basketball star Hank Gathers. Damien Nash of the Denver Broncos. Olympic gold-medal skater Sergei Grinkov. Atlanta Hawks center Jason Collier.

All these top athletes died from heart failure while young and in their prime.

Tim Cox didn’t want that to happen to his son, Tim Cox, Jr., a top high school basketball and football player. The athlete’s grandfather had a thickening of the heart muscle (HCM, hypertrophic cardiomyopathy) and had died at 63, and Tim, Senior had had an electrocardiogram (EKG) showing the same condition. The athlete’s parents prevailed on the young sports star to have an EKG, and it came back positive.

They and the cardiologist had to have a series of tough conversations with their son, who lives to play sports. Tim, Jr. no longer plays competitively. He’ll never help his basketball team get to the state tournament. His parents even wonder if they did the right thing. But what if they hadn’t had him tested and his heart had failed? "How could we have lived with ourselves?!" asked his mother.

Advice to athletes: Ask your doctor to give you a physical exam with the inexpensive 12-point screening recommended by the American Heart Association, which has eight questions and four simple tests.

Read another of our athlete stories, or read Gretchen Reynolds’ source story in the New York Times of June 3.

It was all about money: Drug company incentive payments

David Olson was suicidal, in a hospital. His psychiatrist tried repeatedly to recruit him into clinical trials of a new drug. Indeed, drug companies paid his doctor thousands of dollars for each patient the doctor recruited. But David refused to be a test subject. His doctor discharged him from the hospital. David committed suicide two weeks later.

The state medical board found the doctor had “failed to appreciate the risks of taking Patient 46 off Clozaril, failed to respond appropriately to the patient’s rapid deterioration and virtually ignored the patient’s suicidality.”

David sister, Susie Olson, said the doctor “had no time for my brother unless David agreed to get into a drug study. He said, ‘You’re wasting my time and the hospital’s.’ It was all about money.”

This doctor was not a marginalized “bad apple.” He was the president of the Minnesota Psychiatric Society. Many other disciplined doctors also received thousands of dollars from drug companies. An analysis reported by Gardiner Harris and Janet Roberts in today’s New York Times found the drug makers gave a total of $1.7 million to 103 Minnesota doctors who had been formally disciplined by the state medical board, over the period from 1997 to 2005.

Advice: Before choosing a new doctor, ask the office manager if the doctor accepts money from drug companies.

Read another of our Minnesota stories on this topic.

Speaking is difficult, but it brought national honors: Dystonia patient advocate

Speaking is difficult for nurse Linda Cannon-Mott and other individuals with dystonia, a common movement disorder. But it is speaking out that has brought the Dystonia Support Group of Alabama national honors.

The National Spasmodic Dysphonia Association has named Linda the Midge Kovac award recipient for raising awareness about the disability.

"When you have it (dystonia) you have a lot of emotion; you’re whole quality of life changes,” she said. “When you talk like this and your head shakes, people stare. I wasn’t comfortable going to church or the grocery store."

Linda, a resident of Alabaster, Alabama, was misdiagnosed for 16 years. The entire time she was told she had benign essential tremor and took 12-15 medications. None of those medications helped her and eventually she knew why. She had a voice disorder ("spasmodic dysphonia").

This is why she believes it is so important for the Alabama group to exist.

"We want to prevent other people from being misdiagnosed, let people with the disorder know there is a support group and help other people understand the disease,”"Linda said.

The Dystonia Support Group of Alabama is also being honored by the Dystonia Medical Research Foundation as "Support Group of the Year." The group was recognized for its awareness and fundraising campaigns, including the distribution of thousands of bookmarks with Dystonia information as well as raising $30,000.

More than 300,000 people are affected by the disorder. There is no cure, but it can be treated with multiple shots of Botox. The same chemical that many use for cosmetic reasons helps paralyze muscles and decreases the number of spasms in the body’s extremities.

Advice: Forward this to friends with movement disorders.

Read another story of an activist with a movement disorder, or read Samantha Hall’s source story.

You’ve got to get them home too: An activist patient advocate for children

In 1978, Julia Mikol was born, with severe combined immunodeficiency, which required her to live in a bubble—a completely sterile environment. When she was three months old she had a bone marrow transplant, which gave her a functioning immune system, but left her unable to breathe on her own. She spent the next two years in the Intensive Care Unit at Memorial Sloan-Kettering Hospital in New York City.

Her mother Margaret moved into the hospital to be with her. Because of the huge hospital bills - $350,000 a year – the Mikols exhausted their medical insurance and had to rely on Medicaid. Though Medicaid would pay the huge hospital bills, its rules initially forbade reimbursing the Mikols for caring for Julia at home much less expensively, at about $50,000 a year.

But after a long bureaucratic struggle, the Mikols became the first parents in New York, and only the second family in the nation, to benefit from the rules of a new federal program that allows Medicaid payment for home care for a child like Julia on life support. "The process transformed my personality," said Margaret. "I had been shy and timid, and I became brassy and obnoxious. I changed into a beast to protect my child."

Julia’s condition worsened as she got older. At age eight, she refused a recommended heart and lung transplant, and her parents reluctantly agreed. Before she died, Julia asked her mother to promise to help other children: "You got me home. You’ve got to get them home too."

Sick Kids Need Involved People is the fulfillment of that promise. The organization, with a shoestring budget, has helped 7,000 families deal with their children’s life support, cancer, HIV/AIDS, sickle cell anemia, muscular dystrophy, cerebral palsy, autism, and other conditions. Margaret and her staff help parents navigate the hospital, insurance and Medicaid systems, and assist with school and housing issues, and advise parents on dealing with the sick child’s healthy siblings.

Margaret hopes one day to build a clinically staffed residential community.

Advice: Forward this to your friends with hospitalized children.

Read another of our hero stories, or read Caroline Kennedy’s source story in the June 4 issue of Time magazine.