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(BPT) - Kimberly Kuchler wasn’t too worried when she first felt some mild abdominal pains last summer. Young and full of energy, the former collegiate athlete wasn’t about to let anything slow her down, especially since her orthopedic sales job required her to be on call.
Besides, she thought, it’s only a stomach ache. What’s the big deal?
But these were no ordinary stomach aches. Instead her pains were caused by lipoprotein lipase deficiency (LPLD), a rare genetic disorder that prevents the body from properly digesting certain fats. The disorder is so rare it affects only one out of every one million people in the U.S. Ms. Kuchler was one of them.
On November 13, 2013, Ms. Kuchler had no idea she had LPLD. She knew nothing about the disease or that it was about to trigger an eight-month living nightmare that would almost kill her. But when her ordeal finally ended, Kuchler found her life had a new purpose. “I knew I had to help others like me. Not just with LPLD but with all rare diseases,” she says.
Kuchler’s goal of helping others with her disease is shared by a new resource for people with LPLD, the LPL Deficiency Association, which is a vibrant community where patients, families and caregivers can connect, share and learn by visiting lplda.org. “I’m thankful this resource is out there for others with LPLD,” Kuchler says. “For me, one of the most difficult things about having LPLD is finding reliable medical information about my disease.”
For Kuchler, it all began Nov. 14, 2013. On that day, her abdominal pain became intolerable and she was admitted to Virginia Hospital Center. Because her level of triglycerides (a fatty substance found in the blood) was dangerously high, she was transported to Fairfax Hospital’s Trauma Intensive Care Unit (ICU).
She was diagnosed with acute necrotizing pancreatitis, one of the worst effects of having LPLD. Normally, the pancreas converts food into fuel for the body’s cells. But Kuchler’s enzymes were activated inside her pancreas and “digesting” the pancreatic tissue, causing swelling, bleeding and damage to her pancreas, blood vessels and other organs.
She spent most of the next five months in hospitals, including 83 days in ICUs at three different hospitals. In addition to abdominal pain that felt like knife cuts, she had multiple septic infections, enlarged pseudocysts, multiple instances of fluid build-up in the abdomen and pelvic area and agonizing joint pain.
At one point, large volumes of IV fluids caused her to gain more than 30 pounds in just three days. Another time, she lost 60 pounds when a near-fatal infection prevented her from eating or drinking water for two weeks. Eventually, she could not breathe and had to undergo an emergency procedure, during which a large needle went through her back and into her left lung to draw out the infected fluids.
After her temperature hit 107 degrees, Kuchler was transferred to Johns Hopkins University Hospital for more invasive procedures, countless tests and blood transfusions. She experienced episodes of delirium and paranoia and lost her memory for two weeks.
After all that, she was discharged in March and seemingly on the road to recovery. After four weeks, she felt well enough to go out for a run. But nearly 24 hours later she woke up in the middle of the night, feeling critically ill. She tried walking toward her bathroom but fainted and collapsed, striking her head against a marble slab. This caused her to suffer a seizure, and she was rushed to INOVA Fairfax Hospital where she was given an emergency transfusion of three units of unmatched blood through her carotid.
“Nothing was as scary as lying in that hospital bed and seeing about a dozen physicians run into my room,” says Kuchler. “Thankfully, they saved my life.”
Finally, this past June, Kuchler was diagnosed with familial hyperchylomicronemia, a syndrome caused from LPLD that affects only one in 1 million people in the U.S. Because she lacks lipoprotein lipase, Kuchler takes enzyme pills to aid digestion and daily lipid medicine to control her triglycerides. She is also extremely conscientious about her diet.
Being incapacitated for months by LPLD has fueled her life-long passion to help others, especially those with rare diseases who often feel lost, alone and vulnerable. She is dedicated to connecting patients who have rare or orphan diseases, as well as raising awareness about the promise of evolving gene therapy. She also is developing a recipe guide called “NoSugarNoFatNoProblem!” to help those with LPLD maintain a healthy diet, which is so important in managing their disease. “I was excited to find that many companies are researching LPLD and that resources are available to help patients be more proactive,” she says. “Hopefully, this will help some of them from ever experiencing an attack of severe acute pancreatitis.”
The LPL Deficiency Association offers caring support for a unified community of parents, families and caregivers to share, network and learn from reliable, credible educational resources. The association’s goal is to build awareness of the impact of LPLD on patients and their families while advocating the need for appropriate diagnoses, treatment, research and a cure. You can learn more about the association, as well as the LPLD national and international community, by visiting lplda.org.
(BPT) - Three siblings sit in their kitchen enjoying a bedtime snack of sliced oranges. One of them accidently takes too big a bite and suddenly his face is red and he can’t breathe. A routine activity has turned into a choking emergency. Without a second thought, an older sibling wraps his arms around his brother and performs the Heimlich maneuver. The orange slice is dislodged. Oxygen is restored. They all can sleep soundly.
“It happened too fast for me to be nervous,” Louis Fritz of Walton, Kentucky, says of his heroic act.
Thankfully, Fritz was able to recognize the signs of choking and perform the Heimlich maneuver with confidence - saving his younger brother’s life.
Choking is the fifth leading cause of accidental death in the United States. Over the years, the Heimlich maneuver has saved an estimated 50,000 U.S. lives, and thousands more worldwide. Although most people don’t consider themselves heroic, one organization is passionately working to teach people that anyone can be a Heimlich hero.
A Deaconess Associations, Inc. initiative, Heimlich Heroes is a free interactive program designed for children ages seven and up. By the end of their basic one hour training, students are taught how to recognize the signs of choking, minimize or eliminate the risk of choking and properly perform the Heimlich maneuver.
Over 4,000 people across 22 states have been trained or have registered with Heimlich Heroes for training free of charge.
“Our goal is to train as many young people as possible,” says Terri Huntington, program manager, “Children are curious and excited that they have the potential to save a life.”
The Heimlich Heroes training kit includes an instructional video, learning materials for students based on their ages and the Heidi or Hank training doll. These 42-inch dolls feature an internal diaphragm, lungs and a windpipe. The dolls’ plastic mouths expel a peanut-sized foam cushion when the maneuver is performed correctly.
Practicing the maneuver on a doll helps children learn the approximate amount of pressure they need to exert and it builds confidence in performing it. When faced with a choking emergency, trained children are then ready to spring into action and save a life.
“The kids are so much more conscious about choking hazards and took the training a lot more seriously than I even expected them to,” Jessie S., a school nurse who administered the training in Texas. “It was so easy to put together and we had no problems at all. We really look forward to doing it again next year.”
Although the basic training session only lasts an hour, extended lessons that align with the Common Core curriculum are available for school use.
Fritz learned about the Heimlich maneuver from reading a hospital poster a few years prior. Other children are learning about it from parents and guardians, movies (like Mrs. Doubtfire) and Scouting organizations.
“I had never actually practiced the Heimlich maneuver before I had to use it on my brother,” reflects Fritz, “I think it’s important for all kids to be trained because you never know when you might need to save someone from choking.”
Heimlich Heroes is specifically designed to help children, teachers, sitters, parents and other youth leaders become equipped to handle a choking emergency and prevent needless deaths. “Training is simple, free and easily accessible. Investing even just 45 minutes can mean the difference between life and death,” explains Huntington, “Anyone can be a Heimlich Hero.”
To access free training materials and learn how to bring Heimlich Heroes to your school or organization, visit www.heimlichheroes.com/anyone.
(BPT) - You may consider child hunger to be a world away problem, however, the reality is there are 16 million children right here in America who are faced with hunger. That’s one in five children who don’t know where their next meal will come from. When you think about that statistic, one of these children can easily be your own neighbor – or even your child’s best friend.
Unilever Project Sunlight, an initiative focused on encouraging people to create a brighter future for children, is rallying people nationwide to “Share A Meal” to turn the tables on child hunger in America. Award-winning filmmaker, Patrick Creadon, joined the effort and created a four-minute documentary "Going to Bed Hungry: The Changing Face of Child Hunger,” that takes an inspiring look at child hunger in America as told through stories of real families faced with the issue.
Creadon notes, “Going beyond donating – to sharing a meal or a moment of support – truly underscores that this is an issue that touches us all in every community in every pocket of this country. These are our children.”
Whether it’s sharing a meal, donating time or money, volunteering, or deciding to learn more – small steps can make a difference when multiplied over time to help end child hunger and build a brighter future for children.
Proving that no one is too young to do their part is hunger activist Joshua Williams. At age five and with just $20, Williams created Joshua’s Heart Foundation with a goal to stomp out hunger one community at a time. Now 13 years old, Williams and his organization distribute food to about 50 families each week and have delivered more than 650,000 pounds of food to date.
“I started my foundation because I didn’t want to see people go hungry,” says Williams. “Now, eight years later, I’m mentoring other kids to join in the fight against child hunger and teaming up with Unilever Project Sunlight to get even more people involved in the cause.”
Here are just a few suggestions on how you can get involved and make a difference:
* Help a family in your neighborhood: Share a meal with a neighbor. A simple dinner party, or even packing an extra lunch for your child to take to school, can go a long way.
* Partner with local organizations: Tap local community organizations to find opportunities to coordinate an event or volunteer your time.
* Coordinate with your local food bank: Get in touch with a local food bank in your area to help collect donations or even or host your own local food drive.
* Host a virtual food drive: Unable to get out of the house? You can create your very own personal food drive online to share with friends, family and colleagues for contributions.
* Donate: Consider donating to a child hunger relief organization.
* Lend your voice: Inspire others by revealing why you’re helping to end child hunger on social media using, “I #ShareAMeal because…”
Go to ProjectSunlight.us to watch the documentary and learn even more ways to get involved.
(BPT) - With the significant impact elections have on our country, would it be surprising to hear that only 38 percent of eligible Americans voted in the 2010 election? What happened to the other 62 percent of voters?
Perhaps it’s an overwhelming amount of information. Or maybe it’s a lack of access to the right information that keeps voters from feeling engaged. With the November mid-term elections quickly approaching, now is the time to learn more about candidates and issues on the ballot so you can make your vote count.
Here are five tips for staying informed and updated on the latest with local races and issues that matter so your vote counts on Election Day:
1. Know where to go
It’s important that you have registered to vote and know the local polling location where you can go to cast your ballot. Call your local city hall or visit http://rockthevote.com, a nonpartisan website. Additionally, learn about absentee voting options if you’ll be traveling on Election Day.
2. Get a go-to guide
Elections are personal and your election information should be as unique as you are. Whether you’re focused on the races on the biggest stage or those handling business just down the street, the Bing Voter’s Guide is designed to bring you the most comprehensive, balanced and reliable information based on the races, ballot measures and issues that matter to you this November.
3. Use customized tools
Voters are looking for customized tools and information to help them make the right decision this fall. With Bing Predicts, you can see the impact voting results will have on top issues and get the latest news on how key races at the local, state and national levels will affect you. Visit bing.com/elections to learn more.
4. Cast your vote
Make time in your day to visit your local polling place. Know voting hours and what form of identification is acceptable beforehand. To save time, avoid peak voting periods like over the lunch hour. Many states have laws that require employers to give employees time off to vote, so learn about your rights. Additionally, some cities allow voting by mail, so ask if that is an option for you.
5. Watch the results
Your local news stations and government websites should report on voting results. You can follow the polls on Election Day after voting is closed or get results the next morning. No matter the results, you should feel proud you learned about the issues affecting your community and took action to vote and make a difference.
(BPT) - While breast cancer awareness has greatly increased over the last two decades, a recent national survey found that women and families are not talking enough about breast health. Eighty-seven percent of women said they could talk to their daughters about anything, but less than half said they have actually talked with their daughters about breast cancer. A person’s most influential health role models come from within the family, so it’s important that families - mothers, daughters, sisters and aunts - start talking to each other more about breast health.
Simply being aware is not enough. According to the Ford Warriors in Pink breast cancer awareness and education program and the Dr. Susan Love Research Foundation, breast health conversations among families - particularly between mothers and daughters - can help loved ones understand their risk for the disease, learn preventive steps, ensure timely screening for early detection and ultimately save lives.
For many women the obvious next questions are: How do I bring up this subject with my daughters? What’s the right age to talk to them? What do I say?
Talking about your family’s health history isn’t easy for anyone. Discussing human anatomy - particularly a woman’s breasts - can be an awkward conversation for mothers and young daughters, according to Dr. Susan Love. For others, cultural stigma prevents them from speaking openly about their diagnosis.
When 51-year-old Marisol Rodriquez was diagnosed with breast cancer in 2005, she felt embarrassed to talk about it - even with her then-teenage daughter, Ariel. Marisol says her “proud Peruvian” heritage created a barrier to communication, resulting in her being very private during treatment. It wasn’t until she joined a breast cancer survivors’ dragon boat racing team three years later that she became more comfortable talking about her experience and sharing this with her daughter.
Only 50 percent of mothers who have had a family member diagnosed with breast cancer have talked to their daughters about breast health, according to the survey commissioned by Ford Warriors in Pink. “Families need to become more comfortable talking about this with each other if people are going to continue to make strides in the battle against this disease,” says Love.
Now in its 20th year in the fight against breast cancer, Ford Warriors in Pink is encouraging families everywhere to talk about breast health and reminding women to encourage their daughters, no matter what age, to get to know their breasts. Not because they might have cancer – but because breasts are an important part of their overall health and well-being. Having these important conversations are not about alarming people; it’s about empowering them. And recognizing every conversation will be different is important, especially when considering your daughter’s age and stage of life. By starting these conversations earlier, families can set the foundation and open the line of communication for later in life.
Today Marisol embraces her role as a mother and survivor by advocating for important health conversations as a Model of Courage for Ford Warriors in Pink. Here are some conversation-starting tips that she follows from Dr. Love:
* Recognize the conversation will need to be adapted depending on your daughter’s age and stage in life: Approaching breast health as part of the larger picture of overall health and wellness can make it an easier conversation starter, particularly for adolescent daughters.
* Emphasize the function - not just the form - of breasts: By teaching the importance of the breast as an organ, mothers can help young daughters understand why and how to take care of their body as a whole.
* Choose a casual setting: Sitting down at the dinner table may seem overly formal or intimidating. Instead, try starting a conversation in the car or somewhere a little more intimate. Research shows both mothers and daughters feel that the car is a comfortable place for important health conversations - the audience may be captive but there will be less pressure to stay on one topic once the ride ends or the scenery changes.
* Use family get-togethers to more broadly explore your family’s health history and risk for breast cancer, highlighting its importance as a disease and as a conversation among loved ones.
Ford Warriors in Pink and Dr. Susan Love Research Foundation are just a few of the organizations that not only raise breast cancer awareness, but promote important preventive conversations about breast health. As part of its efforts to drive more breast health conversations, Ford Warriors in Pink is honoring its Models of Courage, who like Marisol, have embraced breast health as a family affair. Though there’s no cure yet for breast cancer, a simple conversation could lead to a timely screening that can save a life. And more, these conversations can help equip the next generation of women to feel more comfortable making breast health and breast cancer an everyday conversation and help continue to fuel the fight against breast cancer.
(BPT) - Many people agree that it’s the people they encounter throughout their lives that really make it worth living. But can the people you meet in your final months truly have that much of an impact?
For many hospice patients, including Houston Hospice El Campo patient Bryan Caldwell, the answer to this is clearly “yes.” On a daily basis, he’s come to realize that choosing hospice is about much more than choosing the services it offers. It’s about the people who truly care and strive to make special moments happen for him.
Caldwell is a former NFL player, surfer and rancher who was diagnosed with Hodgkin’s Lymphoma shortly after celebrating his 50th birthday. When his disease became unresponsive to treatment, he sought the support of hospice in order to “keep moving and keep living each moment that comes along.” Since that decision, Caldwell’s hospice team and family have given him the strength and ability to do the things he loves, like fishing, gardening and raising birds.
Caldwell’s hospice team includes nurses, social workers and physicians to provide all of the medical expertise and support he needs. Other hospice team members can include health aides, trained volunteers, clergy, counselors, and speech, physical and occupational therapists.
For Caldwell - and many other patients - the hospice nurse is one of the most vital parts of the hospice experience. Caldwell’s nurse visits him each week and has become part of his hospice family. Nurses make routine visits to the patient’s home, making sure that pain and other distressing symptoms are well-managed and reporting back to the physician and other team members. Hospice nurses are available 24 hours a day, seven days a week, making them an accessible and important resource for the patient and family.
Social workers are another key ingredient to the hospice team. Caldwell’s social worker was able to reintroduce him to his hobby of raising pigeons. Social workers’ responsibilities can vary from patient to patient. They often help patients and family caregivers navigate a range of practical and financial matters, including information about insurance and health care decisions. Perhaps most importantly, they can coordinate activities for patients to help them stay involved in the things that are most important to them.
Another cornerstone of hospice care is involving the patient’s family. Hospices rely on family members as part of their care plan to increase the patient’s comfort and quality of life. Caldwell’s wife, Krista, is with him every day, and the hospice team supports her in caring for his needs and participating with him in what he calls his “timeless time.” In many cases, hospice organizations educate family members so they can be more comfortable caring for their loved ones. Being comfortable at home on hospice allows Caldwell to enjoy more time with the rest of his family, including his children, grandchildren and four dogs.
Hospice is often described as specialized medical care, but that is only part of the story. As Caldwell has experienced, it is often the people who provide this care that make hospice the best choice for getting the most out of life’s final moments.
To find your local hospice, and to see more of Caldwell’s story called Finishing Strong, visit MomentsOfLife.org.
(BPT) - There’s no denying that STEM (science, technology, engineering and mathematics) education is on society’s radar. President Barack Obama’s “Educate to Innovate” initiative hosts a yearly STEM-themed science fair at the White House. STEM summer camps are popping up across the country and hundreds of thousands of parents, educators and policymakers convene annually at STEM conferences nationwide. The nation’s job market even reflects the popularity as recent data shows that across STEM fields, job postings outnumbered unemployed people by almost two to one.
Although STEM education is recognized as a crucial way to spark students’ interest in innovation and technology, there remains a perception that it only focuses on a few areas of study and does not expose students to more creative activities or job fields, like visual arts, music or writing. However, STEM education helps children develop several crucial skills outside of an interest in science, especially at the elementary level, and these skills can be applied across most areas of study. Here are a few extra benefits of STEM education beyond the beaker and microscope:
* Cultivating creativity – Creativity is rooted within the scientific process, especially when it comes to figuring out solutions to problems. STEM education encourages students to look beyond the obvious solutions and come up with creative ways to make something work in a new or different way than is typically intended, such as figuring out how to survive without natural sunlight. This kind of experience parallels the creative process a musician or artist undertakes, as there may not be a wrong or right answer and the student will likely discover something interesting no matter what.
* Building teamwork skills – Many popular STEM activities, such as building a bridge using only toothpicks and gumdrops, require students to work in pairs or groups to accomplish their objective. This gives kids opportunities to learn how and when to both lead a group and listen to their peers, and demonstrates the value of what they can accomplish when they put their heads together to complete a task
* Becoming problem solvers – STEM education centers around problem solving. The entire practice of engineering is about finding a solution to a problem, and if that doesn’t work, starting over again and finding another one. This kind of thinking helps kids develop crucial problem-solving skills so that they are ready to tackle life’s problems, big or small.
Recent studies have shown that kids are not asking as many questions as they grow older, causing a loss of interest in their environment. This startling notion has prompted policymakers and educators to take action. In 2013, several groups including the National Research Council (NRC); Achieve, Inc.; the National Science Teachers Association (NSTA); as well as thousands of science educators, scientists, business leaders, and other leaders in science education, came together to develop the Next Generation Science Standards (NGSS). These new standards emphasize exploration and experimentation, rather than unengaging lectures or rote memorization of facts.
In addition to new science standards, there are many programs that reinforce STEM skills and foster a love of science in kids of all ages, such as the Toshiba/NSTA ExploraVision program. The world’s largest K-12 science award program, ExploraVision invites students to think ahead 20 years into the future and propose an idea for a new technology and approach based on a challenge or limitation that exists today. ExploraVision incorporates many of the science and engineering practices promoted in the NGSS, so teachers can use it as an opportunity to enrich their curriculum with hands-on experiences or offer it as an extracurricular opportunity for their students.
“ExploraVision provides a unique opportunity for kids to experience the benefits of STEM education, especially at the early age in the kindergarten-3rd grade level of the competition,” says Bill Nye, acclaimed scientist, educator and program spokesperson. “As they work together to solve a real-life scientific problem, they develop not only an interest in science, but also develop their creativity, leadership skills and communication skills.”
While STEM education may increase the prevalence of much-needed scientists, engineers and mathematicians, it will also help contribute to a generation of well-rounded, inquisitive children who are equipped with skills to help them become the future leaders of the world.