DiversityNursing Blog

By Cynthia Howard RN, CNC, Phd

Finding the right nursing job includes finding a manager that will help you grow, develop, and support your career goals.

There is a saying that people leave their managers and not their jobs and to have success in your career may mean you want to circulate your resume in order to find the best fit for you. This means you have to know what you want and need in the area of support.

Here are 10 warning signs you may be working with the wrong manager:

1. You never hear from your manager prior to your performance reviews. Over 75% of performance problems can be improved with proper feedback and less than 33% of the time, feedback is provided.
    
2. You have no idea what they want.  This can be worse than not having feedback at all. When a manager says, “I do not like how you did that,” you really have no way of knowing what they really mean. Make sure to ask for clarification. Review your job description and ask for your manager to specify what parts of your job responsibilities are most important to them. It could be they are focused on patient safety and you have an interest in health literacy. Knowing what they want gives you the advantage of focusing your efforts for the greatest gain.
    
3. It is their way or the highway.  This is a problem for many nurses. Job satisfaction comes with autonomy and the opportunity to solve your own problems as they show up on the job. When a manager consistently tells you what and how to do something, employees quickly turn off their own creativity; more than likely, with an increase in mistakes.
   
   A nurse who is practicing for 7 years shared a story about his experience on a new unit. His Clinical Specialist was a micro-manager. She told him to give this medication immediately because of incoming admissions. She had poured the med. This went against his better judgment but because he knew she would have a fit, he gave it, to the wrong patient. She was extremely apologetic however the “error” was on him. Do not compromise your judgment for the sake of status quo.
    
4. Your manager wants you to figure it out.  The opposite of micro-managing is to not manage at all and letting everyone figure it out for themselves. This happens quite a bit leaving the power position to go to the most domineering individuals on the unit. Everyone needs to know the manager is in charge and when needed will make those tough decisions.
    
5. You could not recognize them if your life depended on it.  If your manager hides behind email or a closed door, having a relationship with your manager will be impossible. Communication and trust is the foundation of a great working relationship.  
   
   Suggestion for managers: Time is an important commodity and getting around to all your staff can be time consuming. Why not use technology and set up a short video. Most iPhones take excellent video. Take 2-3 minutes every week and share what is going on. You may also want to share something personal about yourself; if you just started juicing, kickboxing, celebrated an anniversary or a milestone with your children. Interview them, show images along your morning run, and share something of yourself in order to make the connection with your staff.
   
   Suggestion for staff: Make a short video on your unit of a new initiative, gratitude board in the break room, more efficient way to give report, a snippet of rounds, and just a friendly hello from everyone on the unit. You may even want to say thanks and express appreciation; managers are people too!
    
6. The way out the door is faster than up. If you have a manager that makes any attempt for you to advance your skills difficult, it will be hard to boost your resume. Managers can feel threatened by qualified staff members who want to move up the ladder and may indirectly thwart your efforts to move forward. This is really short sighted on the manager’s part because any manager that turns our qualified leaders actually looks really good to their higher ups given the ongoing need for good talent in any organization.
    
7. Lack of training.  Being able to do a job well requires the right training. Often it takes the manager to assess the need for training based on performance and outcomes. This relates to the lack of feedback. While every employee really should do their own assessment of what they need to do well and then make the request of their manager, the manager should also be on the lookout for staff that need training and set up opportunities to make this happen.
    
8. When the manager has obvious “favorites.”  Everyone has preferences in personality style, but when the manager consistently selects one particular individual for all the initiatives, opportunities for advancement, or other assignments that provide variety, the manager is sending a message to others they do not care about your skills or your future.
    
9. When your manager routinely says, “I’ll think about it.”  Obviously considering all sides of the problem/ situation is important however some managers hide behind this and never make a decision about what is the ideal way to go.  Quickly, this can be frustrating if you are looking for a course of action to solve a problem.
    
10. When your manager over reacts or criticizes you in front of others.  This is a toxic behavior and is an indication you want to find a new place to work. Quickly this will diminish your self-esteem, leading to resentment and stagnation.
    
    Knowing what you want in the way of workplace is key and will help you avoid a poor manager. What type of opportunities are you looking for in the workplace? What are your career goals? Evaluate the workplace, ask questions, find out the management style, review a performance appraisal, ask about turnover, and see if you can build a relationship with your new manager.  

Enjoy the opportunity to find a place that truly supports and honors you! 

Source: www.nursetogether.com

By ELIZABETH A. HARRIS

The police were banging on the doors and the windows of her home while she cowered in the closet, a 17-year-old girl recounted. She remembered clutching her phone, crying, calling her mother.

“I was scared,” she wrote of the experience.

It may sound like a drug raid, or the climax of a movie. But in fact, the police, along with representatives of Connecticut’s Department of Children and Families, had come to take the girl for chemotherapy.

Do you think she has the right to refuse chemotherapy?

The girl, identified in court papers as Cassandra C., learned that she had Hodgkin’s lymphoma in September. Ever since, she and her mother have been entangled in a legal battle with the state of Connecticut over whether Cassandra, who is still a minor, can refuse the chemotherapy that doctors say is likely to save her life. Without it, the girl’s doctors say, she will die.

“It’s poison,” Cassandra’s mother, Jackie Fortin, said of chemotherapy in an interview on Friday. “Does it kill the cancer? I guess they say it does kill the cancer. But it also kills everything else in your body.”

Ms. Fortin continued, “It’s her body, and she should not be forced to do anything with her body.”

Doctors said in court documents that they had explained to Cassandra that while chemotherapy had side effects, serious risks were minimal.

On Thursday, Connecticut’s Supreme Court ruled that Cassandra had had the chance to show at trial that she was a “mature minor,” competent to make her own medical decisions, but had failed to do so. And so the chemotherapy treatments, which had already begun, will continue.

Cassandra was a healthy, artistic 16-year-old before the illness was diagnosed, her mother said. She liked to paint and draw, mostly abstract pieces, but also cartoons and silly things. She had a paper route and a retail job. She had a tattoo on her back of the character Simba from “The Lion King,” the namesake of her cherished, yellow tabby cat. She had been home-schooled since the 10th grade.

Then she found a lump on the right side of her neck. She went to her pediatrician, and after rounds of tests that dragged on for months, doctors at Connecticut Children’s Medical Center in Hartford told her she had Hodgkin’s lymphoma. According to court documents, her doctors said that with chemotherapy, and sometimes radiation, patients had an 85 percent chance of being disease-free after five years.

Ms. Fortin, of Windsor Locks, near Hartford, said that she and her daughter had wanted a second opinion and a fresh battery of tests. They had begun looking for a new team of doctors to verify the diagnosis, and hoped to find alternatives to chemotherapy.

But the state said in court documents that Ms. Fortin had not brought her daughter to some medical appointments and was “not attending to Cassandra’s medical needs in a timely basis.”

The Department of Children and Families took temporary custody of the girl in late October 2014. Two weeks later, she was allowed to go home, so long as she underwent chemotherapy. But after two days of treatment, she ran away from home.

“Although I didn’t have any intention of proceeding with the chemotherapy once I returned home, I endured two days of it,” Cassandra wrote in an essay published in The Hartford Courant this week. “Two days was enough; mentally and emotionally, I could not go through with chemotherapy.”

About a week after running away, Cassandra came home. In her essay, she wrote that she had returned because she was afraid her disappearance might land her mother in jail. In December, she was hospitalized.

“I was strapped to a bed by my wrists and ankles and sedated,” she wrote in the essay, which was accompanied by a photo of her in the hospital. “I woke up in the recovery room with a port surgically placed in my chest. I was outraged and felt completely violated.”

“How long is a person actually supposed to live, and why?” she wrote. “I care about the quality of my life, not just the quantity.”

In a statement this week, the Department of Children and Families said it preferred to work with families, not compel them, but had no choice in some cases.

“When experts — such as the several physicians involved in this case — tell us with certainty that a child will die as a result of leaving a decision up to a parent,” the statement said, “then the Department has a responsibility to take action.”

Cassandra’s legal battle is not unprecedented, but it is unusual, said Dr. Paul S. Appelbaum, director of the Division of Law, Ethics, and Psychiatry at Columbia University College of Physicians & Surgeons.

“Nobody likes to overrule a parent and a child, particularly when they are in agreement,” he said.

Courts tend to be cautious about ordering treatment over a patient’s objections, Dr. Appelbaum said, and whether they do so often involves several factors, including the seriousness of the condition, the child’s maturity, and concern about whether the child’s opinions are being influenced by a parent or other third party. Several of those variables appear to have figured in this case, he said.

But Ms. Fortin’s lawyer, James P. Sexton, said that Cassandra was only months shy of her 18th birthday, when the decision about her care would be hers to make. By then, the chemotherapy will most likely be over.

Today she is confined to the hospital. Her communications are limited, as are her visits with her mother. Mr. Sexton said the family would continue to fight in court.

Source: www.nytimes.com

By Elizabeth Cohen

But, in the midst of this despair, a miracle arrived at Project Medishare. CNN Senior Photographer Ferre Dollar caught these images seconds after she arrived. Look closely at the center of the photo.

This 4-month-old baby had spent four days alone in the rubble and was unconscious and extremely dehydrated. No one knew if she would live or die. 

But look at her now!

CNN medical producer John Bonifield and I had the pure joy of seeing this wonderful young lady again last week. Her name is Jenny, and she's 5 years old and a pre-kindergartner in Miami. She can write her name and loves to color and dress up as a princess and is adorable and spunky and smart and funny. 

Here are all the miracles that it took to save her life: 

1. That someone happened to find Jenny in the rubble four days after the quake. 

2. That at a time when vehicles were in short supply, Jenny's rescuers flagged down a car to rush her to the hospital. 

3. That the Medishare team of doctors and nurses, led by Dr. Karen Schneider, an emergency medicine physician at Johns Hopkins, managed to get fluids into her. Jenny was so dehydrated her veins had collapsed and Schneider had to put a needle through her shinbone and directly into her bone marrow to deliver fluids. They didn't have to sedate her -- Jenny was so unconscious she didn't even cry.

4. That Project Medishare found a flight headed immediately to Miami, because she needed surgery the tent hospital couldn't provide. Hospital workers flagged down a UN truck and promised the driver they'd name the baby after her if she got the airport on time. 

5. That the baby, then named Patricia after the truck driver, survived the flight to Miami and the emergency surgery. 

When the baby arrived in Miami, it was presumed her parents were dead. She'd been found in the rubble next to the body of a woman, thought to be her mother. 

But that woman turned out to be her baby sitter. Shortly after the baby arrived in Miami, a couple came forward saying they were her parents. Many people doubted them, thinking they just wanted to get to Miami, but DNA testing showed they were telling the truth and the baby's name was actually Jenny. 

Now Jenny and her parents, Nadine Devilme and Junior Alexis, and her 17-month-old little sister, Naima, live in an apartment in North Miami. Her parents have explained to Jenny that the bumpy scars on her left arm are from when she was crushed in the rubble of the Haiti earthquake. They've told her she's a miracle, that Jesus saved her. 

Jenny nods her head and says she understands. But really she's a little embarrassed by all the attention and just wants to go put on her Cinderella dress and go outside and ride her bike and then draw pictures of big red flowers under a sun and sign her name: 

Jenny Alexis.

Source: www.cnn.com

By SYDNEY LUPKIN

A court will determine whether a 17-year-old girl, under something called the "mature minor doctrine," can be forced to undergo chemotherapy after she refused treatment for her cancer.

How do you feel about this?

The case will go to the Connecticut Supreme court this week to determine whether the teen, identified in court papers as Cassandra, has "the fundamental right to have a say about what goes on with your [her] body," attorney Michael Taylor, who represents the teen's mother, told ABC News. Taylor was appointed by the public defender's office, and Cassandra has her own court-appointed lawyer, but they've filed joint appeals.

Cassandra was diagnosed with Hodgkin's lymphoma in September, but decided she didn't want to complete the prescribed treatment, according to a court summary. Her mother supported this decision, but the Department of Children and Families stepped in and ordered her mother to comply with the doctor's treatment recommendation.

"It's really for all the reasons you might imagine," said Taylor, adding that he couldn't go into more detail.

Although chemotherapy is a drug that destroys cancer cells, its side effects include hair loss, nausea, pain and fertility changes, according to the National Cancer Institute.

Cassandra underwent two chemotherapy treatments in November and then ran away from home and refused to continue treatments, according to the court summary.

A court hearing ensued in which Cassandra's doctors testified, and she was removed from her mother's home and placed in state custody so that the state could make medical decisions for her.

She has been has been living at Connecticut Children's Medical Center and forced to undergo chemotherapy for about three weeks.

The Hartford Courant reported that Cassandra has an 80 to 85 percent chance of surviving her cancer if she continues with her chemotherapy.

The state Department of Children and Families issued the following statement:

"When experts -- such as the several physicians involved in this case -- tell us with certainty that a child will die as a result of leaving a decision up to a parent, then the Department has a responsibility to take action. Even if the decision might result in criticism, we have an obligation to protect the life of the child when there is consensus among the medical experts that action is required. Much of the improvements in Connecticut's child welfare system have come from working with families voluntarily to realize solutions to family challenges. Unfortunately that can't happen in every situation, especially when the life of a child is at stake."

"No one is disputing that it's very serious," Taylor said. He said there's "a good chance" Cassandra could survive her cancer with treatment, and "there's a good chance she could die if she doesn't. None of us disagree about that."

Taylor said they're trying to argue that because Cassandra is competent, she should be allowed to make this decision for herself through something called the "mature minor doctrine," which has been adopted in Illinois and a few other states but rejected in Texas. The doctrine holds that some children are mature enough to make key life decisions for themselves.

Source: http://abcnews.go.com

By MELENA RYZIK

Artists, it’s fair to say, usually don’t know much about bacteria. Vik Muniz is an exception. Mr. Muniz, the Brazilian-born photographer known for his unorthodox materials, has been working with the M.I.T. bioengineer and designer Tal Danino on a series of trompe l’oeil images of microscopic organisms: cancer cells, healthy cells and bacteria.

At first glance, they look like ornate and colorful patterns. In reality, they represent teeming, living things. Among his latest: a pink print that could pass for floral wallpaper. But it’s made up of liver cells infected with the Vaccinia virus, which is used to make the smallpox vaccine.

“Normally, patterns are soothing structures,” Mr. Muniz said, “and all of a sudden, there’s a lot of drama.”

The work now has another meaning. It will be used in a new online campaign, The Art of Saving a Life, sponsored by the Bill & Melinda Gates Foundation. The intent is to promote vaccination just in time for an international effort to raise funds to inoculate millions, especially in poor nations.

The campaign, to be released online on Wednesday, is the first time that the foundation has commissioned artists in the service of a cause. The global roster includes photographers (Annie Leibovitz, Sebastião Salgado, Mary Ellen Mark); writers (Chimamanda Ngozi Adichie); filmmakers (Luc Jacquet, director of the documentary “March of the Penguins”); and bands (Playing for Change).

The intent is that their work will spread virally — in the digital sense — and be shared on social media with the hashtag #VaccinesWork to inspire a dialogue and donations.

“We want to get the buzz and the conversation going, because it’s easy to take these important lifesaving tools for granted,” said Dr. Christopher Elias, president of the global development program at the Gates Foundation. Art, the foundation hopes, will serve as a reminder to people “who aren’t going to read the editorial in Science,” Dr. Elias said. If the program is successful, he said, it could serve as a model for other Gates Foundation projects.

The idea came from Christine McNab, a consultant to the foundation. In brainstorming new ways to promote vaccines, she considered “what makes me cry, what makes me think,” she said. “It’s films, it’s books, it’s galleries.”

Ms. McNab and her team invited the artists in and suggested which diseases or issues to address. But they had no control over what was created. Some artists were paid a small fee to cover expenses; some retained their copyright, and others donated their work.

Ms. Leibovitz snapped a black-and-white portrait of people involved in vaccine development. Fatoumata Diabaté, a photographer from Mali, captured the last phase of trials for an Ebola vaccine. The German painter Thomas Ganter paid tribute to the little-sung medical aides who administer the shots, with his oil on canvas of “The Unknown Health Worker.”

The project is timed to lead up to a Jan. 27 meeting of Gavi, the Vaccine Alliance, an international public-private partnership in Berlin. Some images will be displayed at the conference, which aims to raise $ 7.5 billion from donors for Gavi’s next phase of development. Separately, the Gates Foundation has funded many immunization-related grants, at a cost of millions — far greater, a spokeswoman said, than the budget for the art initiative, which she would not disclose.

As the project developed in the last year, the anti-vaccination movement, in the United States and other Western countries, only gained steam. Though the programs that the Art of Saving a Life supports are targeted elsewhere, “in some ways what we’re hoping for is not just a broader debate about vaccination and immunization, but a more informed debate,” Dr. Elias said.

Countering the anti-vaccination rhetoric was part of the reason that Alexia Sinclair, a photographer from Australia, participated, she said. “I have a young daughter, and it’s quite a hot topic here,” she said, adding that she thought that producing a work of art “allows the conversation to happen in a clearer way.”

After learning that the Chinese characters for smallpox mean “heavenly flowers” — because the pustules bloom on the body, and the sufferers eventually die — Ms. Sinclair, who makes historically-inspired tableaus, created a scene of an 18th-century doctor administering a vaccination, surrounded by grass and blossoms. It brings a fashion-y aesthetic to an ugly disease. “I wanted to create something that looked at smallpox, but did it in a way that didn’t repulse people,” she said.

In an era when viewers are image-saturated, the campaign’s success, and how to measure it, are an open question. “We’ll look at the metrics,” Dr. Elias said. But, he added, the project has already proved valuable inside the Gates Foundation, as a new perspective on old problems.

“The phenomenal response” from artists, he said, “suggests that we have tapped a set of interests and voices that we perhaps should’ve been paying attention to sooner.”

Source: www.nytimes.com

Patients from around the world are seeking out Basma Hameed's unique skill set. Basma is a para-medical tattoo specialist who helps restore burn victims natural skin color.

Basma found herself in the field of micro-pigment implantation after a tragic childhood accident. When Hameed was just two years old, she was badly burned by hot oil in a kitchen accident. She endured more than 100 painful procedures - from plastic surgery to laser treatments. But half her face remained scarred with red discoloration. She was advised nothing more could be done but refused to give up.

Hameed discovered cosmetic tattooing while getting an eyebrow tattooed to replace the one she had lost from the burn. She decided if tattooing could replace eyebrows, then why not her original skin color?

Basma not only transformed her own face, but also started a booming business - the Basma Hameed Clinic.

She is pushing to have these micro pigment implantation treatments covered as medical expenses, but for those who can't afford them, she does them free of charge.

"I've gone through a lot and I've suffered enough," Basma told CBC News. "And I know I'm not alone. There's a lot of people who are going through similar situations, and I wanted to give back and help as many people as possible."

Basma's success has established an excellent working relationship with reputable plastic surgeons, dermatologists, and others in the medical community who regularly refer clients for permanent makeup and scar camouflage.

In addition to burn victims, Basma also treats people with skin conditions like vitiligo and cancer survivors who need redrawing of eyebrows that disappeared during chemotherapy.

Watch the video below. *Warning: images of burn victims may be disturbing for some.

Source: www.sunnyskyz.com

By Catharine Paddock PhD

The rise of drug-resistant bacteria - such as MRSA - is making it increasingly difficult to control even common infections like pneumonia or urinary tract infections with standard antibiotics. After repeated exposure, the bugs mutate into strains that are immune to the drugs that once killed them.

There is clearly a desperate need for new drugs to fight these superbugs. But there is also another option - to extend the useful life of a drug. Now, researchers have developed a computer algorithm that can help in this area.

Imagine the war against a superbug as a chess game, with each move that your opponent makes being a mutation in the superbug that makes it more drug-resistant. 

To stand a good chance of winning, it helps to anticipate your opponent's most likely counter-moves.

Now, a team of researchers - including members from Duke University in Durham, NC - has developed a computer algorithm that stands a good chance of beating a superbug at its own game.

The software - called OSPREY - predicts the most likely mutations that a bug develops in response to a new drug before the drug is even given to patients.

Writing in the Proceedings of the National Academy of Sciences, the team describes how they tested OSPREY with the superbug MRSA (methicillin-resistant Staphylococcus aureus). 

The researchers programmed the algorithm to identify the genetic changes that MRSA would have to undergo in order to become resistant to a promising new class of experimental drug. And when they exposed MRSA to the new drugs, they found some of the genetic changes the software had predicted actually arose.

"This gives us a window into the future to see what bacteria will do to evade drugs that we design before a drug is deployed," says author Bruce Donald, a professor of computer science and biochemistry at Duke.

The team hopes the approach they are developing will give drug designers a head start in the race against superbugs, as co-author and Duke graduate student Pablo Gainza-Cirauqui explains:

"If we can somehow predict how bacteria might respond to a particular drug ahead of time, we can change the drug, or plan for the next one, or rule out therapies that are unlikely to remain effective for long."

Resistant forms of Staphylococcus aureus now kill 11,000 people in the US every year - more than HIV. In 1975, around 2% of infections caused by the bacterium were resistant to treatment - rising to 29% in 1991 - and now the proportion is 55%.

Depending on the drug, it can take up to 20 years for resistant strains to emerge. Sometimes it only takes 1 year.

Ability to anticipate new mutations beats searching 'libraries' of known mutations

The team believes approaches like OSPREY beat the current method where scientists have to look up "libraries" of previously observed resistance mutations - an approach that is not necessarily satisfactory for predicting future mutations. Prof. Donald explains:

"With a new drug, there is always the possibility that the organism will develop different mutations that had never been seen before. This is what really worries physicians."

OSPREY - which stands for Open Source Protein REdesign for You - is based on a protein design algorithm. It identifies changes to DNA sequences in the bacteria that would enable the resulting protein to block the drug while still being able to work normally.

The team tested OSPREY with a new class of drugs called propargyl-linked antifolates that attack a bacterial enzyme called dihydrofolate reductase (DHFR), used for building DNA and other tasks. The drugs - still to be tested in humans - are showing promise as a new treatment for MRSA infections.

Using OSPREY, the team came up with a ranked list of possible mutations. They picked out four - none of which had been seen before.

One predicted mutation reduced drug effectiveness by 58%

When they treated MRSA with the new drugs, they found more than half of the bacteria that survived carried the mutation they predicted would give the organism the greatest amount of resistance: a tiny change in the bacterial DNA that reduced the effectiveness of the new drugs by 58%.

"The fact that we actually found the new predicted mutations in bacteria is very exciting," Prof. Donald says, adding that the approach could be expanded to anticipate the bug's responses more than one move ahead:

"We might even be able to coax a pathogen into developing mutations that enable it to evade one drug, but that then make it particularly susceptible to a second drug, like a one-two punch."

The team is now enhancing OSPREY to predict resistance mutations to drugs designed to treat E. coli and Enterococcus infections.

They believe OSPREY will be useful for predicting drug resistance in cancer, HIV, flu and other diseases where culturing resistant strains is harder than it is with bacteria.

Prof. Donald and colleagues are developing OSPREY in open source format so it is freely available for any researcher to use.

In September 2014, Medical News Today learned about a study that showed how an  old drug may lead to a potential new class of antibiotics . The study showed that lamotrigine - currently used as an anticonvulsant - can inhibit the assembly of ribosomes in bacteria.

Source: www.medicalnewstoday.com

By ALISON BRUZEK

The last thing on your mind while you're home from school for the holidays is avoiding a deadly disease.

But imagine catching a disease as a teenager — a disease so terrible that it takes not just months to recover, but requires sacrificing both your legs.

That's what happened to Amy Purdy at age 19, when she was diagnosed with bacterial meningitis. It affects only about 4,000 people a year in the United States, according to the Centers for Disease Control and Prevention, but more than 10 percent of those people die. Others, like Purdy, suffer devastating consequences, including hearing loss, brain damage, or the loss of limbs from bloodstream infection.

College students are especially vulnerable, because meningitis is spread by living in close quarters and sharing drinking and eating utensils, or kissing. (An outbreak at Princeton University in 2013 sped up approval a new vaccine for the meningitis B strain.)

That's why the CDC recommends meningitis vaccine for all teenagers, especially if they weren't vaccinated as preteens.

Purdy, now 35, went on to become a Paralympic snowboarding champion and contestant in Dancing with the Stars. She's got a new book, On My Own Two Feet: From Losing My Legs to Learning the Dance of Life, coming out Dec. 30. Shots spoke to her about her battle with the disease and people's misconceptions about meningitis. This is an edited version of the conversation.

Had you heard about meningitis before you became sick?

Of course I heard the name meningitis before. I recognized what it was, but I had no idea that I was at risk. And I have to say, my mom actually told me just about a year before I got sick about one of her friends' son's who battled this horrific disease that came out of nowhere. He ended up losing his legs and his kidneys. It was the exact same thing that I got a year later.

Do you know how you got meningitis?

We have no idea how I got it. I was at an age that's more at risk — I was 19 years old. However, I wasn't a college student. I didn't live in a college dorm. I really wasn't even around that environment. They do say that those who are in college dorms are slightly more at risk than the rest of the world. I don't know how I got it, I was incredibly healthy at the time, I was a massage therapist, I worked out every day, I really took care of myself. It's just this invisible killer that kind of comes out of nowhere.

How did you cope with this loss at such a young age?

For me, it was life-changing. I nearly died multiple times in the hospital. I lost my legs, I lost my spleen, I lost my kidney function. I lost the life that I knew. And going through so much in such a small amount of time and so quickly, for me it put my life into perspective. There were certain things I focused on — I focused on how grateful I was for the things I had versus things I lost. I got a second chance at life and I wanted to use it. I didn't want to waste it by dwelling on what happened or why it happened.

One of the ironies is that those losses actually led to a lot of great things, like Dancing With the Stars and the Paralympics.

Definitely. The way I look at it is, we all have disabilities. We all have things that limit us and that challenge us. But really, our real limitations are the ones we believe. And I, from the beginning, believed that I could accomplish my goals and accomplish my dreams and I set out to do that. I'm very grateful that I've had the opportunities I've had.

A new vaccine for meningitis B was approved this fall, and you're now working with the manufacturer, Pfizer, to promote it. How did that happen?

Pfizer's actually teamed up with my nonprofit organization, which is called Adaptive Action Sports. I cofounded this organization in 2005 to help people with physical disabilities get involved in action sports, go snowboarding, skateboarding. Obviously, they want to get the word out there that there's protection against this bacteria.

I'm really proud to be a part of this campaign, though. You hear about rare diseases and weird things happening to people on Oprah and Dateline and you just never think it's going to happen to you. And then come to find out you actually could've protected yourself against it. To me it seems like a no-brainer.

What do you want parents to ask their teen's doctor about meningitis?

The number one question is, "Do you carry the meningococcal meningitis vaccination?" I feel like if parents could vaccinate their kids against car accidents, they would. This is one of those things where there are ways to help protect your kid against this.

Source: www.npr.org

By LIZ NEPORENT

A 7-year-old boy is one of the first people in the country to receive a potent form of medical marijuana as part of an “extended use” clinical trial to reduce seizures.

Preston Weaver, who lives in Athens, Georgia, has Lennox-Gastaut syndrome which is a severe form of epilepsy. He experiences up to 100 seizures a day, although many are confined to his brain and aren’t noticeable to an observer. There is no known cure for the condition.

“Today’s the day, buddy. We’re not going to have any more of those,” his mom Valarie Weaver, 36, said she told her son as the headed to his first treatment Tuesday.

Her son can't see, walk or talk, Weaver said. Although he's 7, his behavior is more like that of a 2-month-old. But he lights up when he goes in the water and he seems to love the feel of the sun and the wind, Weaver said.

"Our hope is that this treatment will calm down his brain enough so that he will start communicating with us," she said.

Many of the drugs available to treat the syndrome don’t work long term, especially for children. Even with more than a dozen medications Weaver has had no relief.

The active ingredient in Epidiolex, the experimental drug that Weaver and one other child are receiving, is called cannabidiol. It’s also the main active ingredient in marijuana though it doesn’t produce a high.

Dr. Michael Diamond, the interim senior vice president of research for Georgia Regent University said the drug is not legal or approved for use by use by the Food and Drug Administration. The university’s current study, one of only a handful of trials for compassionate use being held around the country, will expand to include 50 children over the next few weeks.

“We are hopeful the drug will reduce the frequency and severity of seizures within a month, but we know it will not work for every child,” he said.

Georgia Gov. Nathan Deal approved the trials in April. It took some time to get additional clearance at the federal level, Diamond said.

“No one with a heart could hear the stories of these children and their parents and not want to exhaust every possibility to provide them with the treatment they need to combat this debilitating condition,” said Deal

Weaver told ABC News that she was grateful her son was accepted into the trial though she was disappointed the state legislature had narrowly failed to pass a bill that would have legalized the drug for use with sick children. But, she said, she’s not giving up.

"Even though Preston is on it, Preston and I are still going to fight for all the other ones too, we will be at the capital every single time, we need to be there until this becomes legal and every child in the state has the option for this treatment if they need it," Weaver said.

Source: http://abcnews.go.com

By Eun Kyung Kim

Even before she had a groom in mind, Katie Breland Hughes knew she wanted to walk down the aisle at her wedding on her own two feet.

It became one of her initial goals after a horrific car accident left her paralyzed from the waist down. But first, she needed to survive her injuries.

“Honestly, I had so many skin graft surgeries and so many burns, my first goal was just to sit up in the bed," said Hughes, now 27. "I was literally at rock bottom."

In October 2011, the Louisiana personal trainer and physical therapy assistant missed a stop sign while driving home from an appointment with a client. A truck hit her vehicle broadside, and Hughes went flying through her windshield. She landed in a ditch and, seconds later, her burning car landed on top of her, searing her back.

Conscious throughout the ordeal, Hughes knew she was either paralyzed or that her legs were amputated because she couldn’t feel either one.

“Immediately, I started asking myself all the physical therapy questions. Is my spinal cord severed? What kind of injury is this? How far up? How low down?” she recalled for TODAY.com. 

At the hospital, doctors told Hughes that she would never walk again. But during a nine-hour surgery to insert rods and plates along her spine to stabilize it, they learned that Hughes' spinal cord wasn’t severed as they originally thought. 

“That was all I needed to hear to keep pushing forward,” she said. “That was kind of my prayer.”

After her 100-day hospital stay, Hughes went home and immediately started training. An athlete all her life —she was supposed to run a marathon the week after her crash — exercise had always given Hughes an emotional outlet. After the accident, her love of exercise proved critical to her recovery, and to attaining the new goal she had created for herself.

“I told my sister from the beginning, I will not get married — whoever it be to, or whenever it happens — I will not do it until I can walk down the aisle. I just won’t be in a wheelchair,” she said. “So that was always a goal. I didn’t know the next year it would actually happen.”

Hughes heard about a Michigan trainer who had worked with other paraplegics. She reached out to him and flew to Michigan to begin training.

“The first time I talked to her on the telephone, she was like, ‘Look, I don’t want to be in this chair forever. I understand what happened to me, but I want to work hard and see where I can get,’” said Mike Barwis, a strength and conditioning coach who frequently works with Olympic and professional athletes. 

It was during a session with Barwis that Hughes moved her legs for the first time since the accident. 

Meanwhile, Hughes had reconnected with a former acquaintance, Odie Hughes. She initially worried about meeting him again now that she was in a wheelchair.

“I didn’t know how he would accept that, or how he would feel about that,” she recalled. “But it was like he never even saw the chair, he just saw me. He believed everything with me. If I told him, ‘I think I can do this. I want to try this,’ then he would be my biggest cheerleader.”

Within three months, they were engaged. Hughes started the clock: She had nine months to get on her feet. Barwis said he had no doubts they could make it happen.

“Katie is a vibrant person. She has an amazing personality and she’s very driven,” he said. “Her mentality has been one of absolute determination.”

But while working to build up the strength in her legs, Hughes also had to plan a wedding. She also opened a gym she started in her community of Bogalusa, about 70 miles north of New Orleans. 

There was also the issue of finding a wedding gown. 

“I actually bought three dresses. I didn’t like any of them,” she said. After getting ready to settle on one of them, she received a call from the cable network TLC, asking if she wanted to be featured on the show, “Say Yes to the Dress.” Hughes flew to the Atlanta bridal store featured on show (the episode airs Jan. 2) and finally found a gown she was happy with.

“Everything about it was perfect,” she said.

Except she never practiced walking in it until the day of her wedding. "I didn’t want anybody to see the real one," she explained. So instead, she practiced using one of the other gowns. She started in a full-body brace, then with a walker before moving on to two canes. Finally, she used two leg braces that went up from her feet to just above the knees, all while holding on to a person on each side of her.

On her wedding day, Sept. 20, Hughes walked down the aisle, on her own two feet, holding the hands of the two men giving her away: Her dad, who stood to her right, and Barwis, on her left. 

As excited as she was, Hughes said she never anticipated the nerves she experienced as she stared down the aisle at her guests.

“I felt like this was everybody’s fairytale ending. This was the story they had been following for so long and this was the ending they were waiting to see,” she said. “So I felt like there was a lot of pressure but there was no greater reward than getting to the end of that aisle, for sure.”

Waiting for her there with a huge smile was her fiance.

"When her foot caught that slip my heart stopped. But she just held it together like a champ," said Odie Hughes. "I had complete faith in her."

He said he never for a second doubted the woman he considers "the most stubborn person I know" 

"When she said she was gonna do it, it was a done deal," he said. "Never one doubt in my mind she'd not only make it down the aisle but she'd do it in dramatic fashion. That's my Katie." 

Months later, Katie is back at work, keeping busy with her physical therapy patients and running her gym, Katie's Shed, where she teaches various cardio and full-body workout classes.

She enjoys newlywed life and said it helps to have a partner who is familiar with life-altering injuries: Her husband once broke his neck during a car accident that left him with metal rods in his legs.

“Me and him both just really understand how quick this life is and how short it can be made,” she said. “We really value each other and the time we have together and with our family. We know first hand how quickly it can be taken from you, so we try to make the best of that.”

Hughes still uses her braces, alternating between them and her wheelchair, depending on the circumstances.

She speaks at local and regional events about her accident and hopes her story will inspire others to reach beyond traditional expectations.

“A lot of people would say, ‘Okay, I did it and now I’m going to be content with my progress right now.’ But I think contentment is our worst enemy a lot of times, just being content with where you are,” she said. “You should always try to excel forward and move forward and continue to reach goals and set new ones.”

Source: www.today.com