Webinar: Being Your Own Best Advocate – October 21 September 24, 2015 by Kylie Karley Do you find yourself frustrated while dealing with the insurance issues related to NS? Do you want to know the most important questions to ask your healthcare team? Then JOIN US on October 21st for a webinar about “Being Your Own Best Advocate”. We will address some of the common hurdles that many families have to overcome when trying to get answers from the doctors and juggle insurance concerns. The webinar will be held on October 21st at 7:45 pm– REGISTER HERE to reserve your spot! Bring your questions and concerns, and we will get you answers!
Things That All Chronically Ill People Will Understand September 18, 2015 by Kylie Karley Thanks to Mariam Girgis for sharing this great video that helps us find the humor in living with a chronic illness! https://www.youtube.com/watch?v=iokn111Zn8A&feature=youtu.be
Take Comfort in the Community September 18, 2015 by Kylie Karley One of the most important parts of coping with a chronic illness like FSGS or Nephrotic Syndrome is being part of a community. Having a group of peers that can relate to what you are going through is a necessity when living with CKD. However, since these diseases are rare, finding a community to call home can be difficult. Luckily, NephCure gives you a variety of opportunities to connect with others and find comfort in a community of your peers! From informative educational workshops to fun-filled walks, there are so many ways for you to be a part of the NephCure family! We listed some of these opportunities below, so sign up for something interesting today and take an important step in your kidney journey. NephCure Community Cafes NephCure Community Cafes are FREE educational workshops held in-person across the country. This year, the topic of each workshop is “Live Your Best Life with Nephrotic Syndrome” and includes a panel with a nephrologist, a nutritionist, and a social worker. We have upcoming workshops in Austin, Baltimore, Nashville, Albuquerque, Ann Arbor, St. Louis, and Philadelphia! See the full list and REGISTER for a FREE workshop today! NephCure Walks NephCure walks are all about community support, family fun and raising funds to find a cure. More than fundraising, NephCure walks provide support for those lives that have been touched by Nephrotic Syndrome and FSGS. CLICK HERE to find a walk near you, or start a walk in your area by emailing events@nephcure.org. Peer Connections Peer to Peer support is important to NephCure, because we feel that patients and caregivers connecting with others and sharing lived experiences is an integral, complimentary part of coping with Nephrotic Syndrome and FSGS. This initiative allows you to ask for a “kidney mentor”, or allows you to join (or start!) a support group with people in your area. There are also online communities- such as NephSpace– that help you connect to others virtually. Learn more about Peer Connections HERE! Webinars Webinars are a great way to connect with patients from all over the world! These FREE events focus on different topics and include a guest speaker. Upcoming topics include Being Your Own Advocate, The Unique Adult Experience, Sibling Support, and more! Check out all of our virtual programs HERE and register today! Other Ways to Get Involved There are unlimited opportunities for you to join our community, so check out our website to find what interests you. From research opportunities to galas, there is an opportunity for everybody to be a part of the NephCure family- CLICK HERE to see them all!
Yoga and Your Kidneys September 18, 2015 by Kylie Karley Yoga is a wonderful way of life, but it is also a great exercise routine. Practicing yoga can reduce stress, improve breathing, and increase strength. Every yoga pose is unique and works a different set of muscles, thus giving you a full-body workout! The breath patterns that come with a yoga pose reduce stress and anxiety, thus letting your mind relax while your body exercises. Yoga poses also increase blood flow to specific areas of the body, which can promote healing. Below are three yoga poses that can promote good kidney health while also reducing stress and working your muscles. Remember, you should always talk to your doctor before starting an exercise routine! Yoga is also not a substitute for any of your medicines, but rather acts as a complement your therapies. Cobra Pose How it works: Cobra pose stretches the abdominal muscles and engages back muscles, thus promoting blood flow to the areas around the kidneys. How to perform the pose: Lie face down with your palms on the floor right underneath your shoulders -INHALE EXHALE- Keeping your neck in a neutral position, use your arms to slowly push your upper body off of the floor until your arms are almost straight, keeping your waist, hips, and legs on the floor, yet actively engaged (HINT push your feet into the floor to engage your lower body) Keep your arms softly bent and your neck in a neutral position while thinking about opening your chest and squeezing your shoulder blades together; INHALE and EXHALE 3 times Slowly lower yourself to your original position with an EXHALE Boat Pose How it works: Boat pose engages your abdominal muscles and gives a little stretch to your back muscles, thus promoting blood flow to the area around your kidneys. How to perform the pose: Sit on the floor with your hands slightly behind you, fingers pointing towards your feet. Your feet should rest comfortably on the floor in front of you, with your knees slightly bent. INHALE EXHALE- lean slightly back, using your hands to support you, and begin to lift your feet off of the floor, keeping your knees pressed together. Raise your legs as high as you feel comfortable and INHALE If you are able, lift your arms at the floor. They can go straight in front of you (one arm on each side of your legs) or they can be raised above your head. If you are able, straighten your legs and think about taking your toes to the ceiling. Wherever you are, INHALE and EXHALE 3 times. Slowly lower your arms and legs with an EXHALE and return to your original position. Seated Twist Post How it works: Twisting poses employ a “wringing” technique common to yoga practice. The idea is that by twisting, you “wring out” the old blood from that area, and new, freshly oxygenated blood replaces it and promotes good health. How to perform the pose: Sit on the floor in a comfortable cross-legged position. Leaving your left leg where it is, move your right leg so that your foot is flat on the floor next to your left thigh and your knee is pointing towards the ceiling. Sit up tall, pushing the crown of your head towards the ceiling. INHALE EXHALE- sit up very tall and twist your upper body to the right (away from your leg), keeping your lower body as still as possible. Place your left elbow on your right thigh to help with the twist, and place your right hand on the floor behind your back Look over your right shoulder, INHALE and EXHALE 3 times while holding this pose. EXHALE- and slowly untwist, and return your right leg to its original position AFTER your upper body is straightened out. REPEAT on the other side. SOURCES: Content: http://www.artofliving.org/in-en/yoga/health-and-wellness/yoga-for-stronger-kidneys http://www.yogajournal.com/category/poses/anatomy/kidneys/ Yoga Anatomy, Leslie Kaminoff. 2007 Pictures: http://www.yogajournal.com/category/poses/anatomy/kidneys/
Kidney-Friendly Recipes for Game Day September 17, 2015 by Kylie Karley Football season is kicking into full gear, which means that tailgating, game-day gatherings, and hardcore eating and drinking will be, too. Following a low-sodium diet at this time of year can be challenging, but we’ve found some great guilt-free recipes for game day that will keep your sodium-intake low and your (and fellow party-goers’) satisfaction high! Ginger Shrimp Skewers http://www.bhg.com/recipe/appetizers-snacks/ginger-shrimp-skewers/ 58 mg sodium per serving Mini Spinach Calzones http://www.bhg.com/recipe/appetizers-snacks/mini-spinach-calzones/ 125 mg sodium per serving Healthy Seven-Layer Dip http://www.popsugar.com/fitness/Healthy-Seven-Layer-Dip-26961537 78 mg sodium per serving Hummus and Crudites Shots http://www.popsugar.com/food/Individual-Hummus-Crudites-Appetizers-36317589?utm_campaign=social_share_button_d 57 mg sodium per serving Taco Balls http://www.livelifeactive.com/2012/07/24/taco-balls-recipe/ 9 mg sodium per serving
Living with Chronic Illness: Recommended Reading September 17, 2015 by Kylie Karley Ask your friendly local librarian to direct you toward these books about living with chronic illness. Let us know in the comments if there are other books we should add to the list! Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness by Paul J. Donoghue and Mary E. Siegel Unlike a leg in a cast, invisible chronic illness (ICI) has no observable symptoms. Consequently, people who suffer from chronic fatigue, chronic pain, and many other miseries often endure not only the ailment but dismissive and negative reactions from others. Since its first publication, Sick and Tired of Feeling Sick and Tired has offered hope and coping strategies to thousands of people who suffer from ICI. Paul Donoghue and Mary Siegel teach their readers how to rethink how they themselves view their illness and how to communicate with loved ones and doctors in a way that meets their needs. The authors’ understanding makes readers feel they have been heard for the first time. How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Tony Bernhard This life-affirming, instructive, and thoroughly inspiring book is a must-read for anyone who is – or who might one day be – sick. It can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or life-threatening illness. Authentic and graceful, How to be Sick reminds us of our endless inner freedom, even under high degrees of suffering and pain. I Still Dream Big: Stories of Teens Living with Chronic Illness by Penny B. Wolf, MSW Getting sick was never part of the plan. Lupus. Diabetes. Rheumatoid Arthritis. Crohn’s. Multiple Sclerosis. No matter what the diagnosis, teens with chronic illnesses share one thing in common: their lives have been changed forever by illness. Seventeen young adults share their personal stories in I Still Dream Big. Their tenacity and spirit are an inspiration to us all. The voices of the teens profiled in this book are filled with hope and optimism despite the very real challenges they face. While some of their goals may have changed, these kids still have high hopes and big dreams for the future. Above all, they refuse to be defined by illness. How Can You NOT Laugh at a Time Like This?: Reclaim Your Health with Humor, Creativity, and Grit by Carla Ulbrich Having a sense of humor is essential to health, says singer-songwriter Carla Ulbrich, who has found laughter to be a lifesaver during tough times. Under the stress of multiple illnesses and constant health ”care,” Ulbrich one day snapped and became the Singing Patient. She channeled her hard won victories, set about reclaiming her health, and penned How Can You NOT Laugh at a Time Like This?, a collection of short, inspiring, funny essays that help people thrive and celebrate life despite illness. Fight Like a Mother: How to Be a Mom With a Chronic Illness by Joslyne C. Decker Fight Like a Mother is a survival guide, offering personal stories, practical advice, tips, and resources on how to be a mom with a chronic illness. Full of the kind of candid advice you would expect from your BFF, this book gives parents with chronic illness hope, confidence, and a good laugh. Chronic Resilience: 10 Sanity-Saving Tools for Women Coping with the Stress of Illness by Danea Horn Chronic illness comes with stress, and Chronic Resilience provides a complete self-help blueprint for managing the difficulties chronic illness presents. Certified life coach and speaker Danea Horn, who suffers from chronic kidney disease, infertility, and other demanding health challenges due to a birth disorder, offers techniques and ways to rebound from the pressures of having a body that’s doing things you wish you could control. You Don’t Look Sick!: Living Well With Chronic Invisible Illness by Joy H. Selak and Steven S. Overman MD You Don’t Look Sick chronicles one person’s true-life story of illness and her physicians compassionate commentary as they journey through the four stages of chronic illness: Getting Sick, Being Sick, Grief and Acceptance and Living Well. The authors address such practical aspects as hiring a doctor, managing chronic pain, coping with grief and loss of function, winning battles with health and disability insurers, countering the social bias against the chronically ill, and recognizing the limitations of chronic illness care and charting a path for change and more. This warmhearted resource helps you focus on building a meaningful life as opposed to a life of frustration and fear. My Wish: For children with a chronic illness or long-term medical issue by Becca Brinkmann, PhD A beautifully illustrated and colorful children’s book about a mom whose young child is sick. Her wish is for her son to smile, laugh, and run again. Do you know a child who is suffering from a chronic illness or is undergoing long-term medical treatment? Create an emotional connection with your child’s struggles. Excellent for children, parents, grandparents, and educators. A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children by Jolene Philo For years, Jolene Philo’s son was hospitalized many times as he battled a life-threatening birth defect. Far from home, without friends and family to support them, Jolene and her husband felt utterly and completely alone. Today, support networks for parents of critically or chronically ill children have improved, but most only provide for urgent physical needs. The devotional meditations in this book address the spiritual needs of these parents as the author shares her own life lessons, as well as those of other parents who have walked this road. No matter how difficult the road, Philo says, you do not have to lose hope.
Innovations for End-Stage Renal Patients July 23, 2015 by Kylie Karley As many researchers continue to search for ways to minimize the damage caused by chronic kidney disease, The Kidney Project is exploring an innovative way to improve the lives of patients who have experienced kidney failure. The lab at UCSF is heading a project on a small, implantable artificial kidney, and NephCure had the chance to hold a Q&A with The Kidney Project to hear all about this project. It could be a game-changer for patients in need of dialysis! 1. What interests you about this area of the body? Why did you choose to work with kidneys? Chronic kidney disease has reached epidemic proportions. An astounding 26 million Americans live with this disorder. As incidences of diabetes, high blood pressure, and obesity rise – some of the key causes of chronic kidney disease – so do the numbers of people diagnosed with kidney failure. These patients will either need dialysis or a kidney transplant. Neither option is ideal. Only 20 percent of patients on a kidney transplant wait list in any given year receive a new kidney, and individuals receiving dialysis are often unable to work, eat normally, or live full lives. Our team is developing a surgically implanted, bioartificial kidney to perform the vast majority of the filtration, balancing, and other biological functions of the natural kidney. The two-part device combines a membrane hemofilter and a bioreactor of human renal tubule cells to mimic many of the metabolic, endocrine, and immunological functions of a healthy kidney. It is powered by the body’s own blood pressure without the need for external tubes and tethers or immunosuppressant drugs. 2. Where is the artificial kidney at in the development process? When do you hope to have it available for patients? We need to complete animal studies to demonstrate safety and functionality of the bioartificial kidney. Through our collaboration with the Food and Drug Administration (FDA), we have developed a pathway that will allow us to arrive at the first clinical trials with a pre-negotiated set of milestones. In this pathway, we must first show that the hemofilter will successfully operate in vivo for 30 days. We are currently working on this task. Given our budgetary constraints, we have taken the approach of constructing small-scale hemofilters and evaluating their performance inside animals as a function of filter arrangement, vascular connections, and surface coatings. We have successfully shown filtration for 10 days and vascular patency for 30 days. As funding becomes available, we will increase the filtration to 30 days with full-scale devices. The completion of this key task will provide the necessary data for us to approach the FDA for approval of the first clinical trial. We expect to have a device released for clinical trials in the year 2017 if we successfully raise all of the necessary funding and we do not encounter any unanticipated development challenges. Typically, there are at least two cycles of clinical testing required for all medical devices. The nature of the results of the first round of clinical trials will largely influence the timing of release and industrial-scale manufacturing. That being said, we estimate that the clinical trials will be complete by the year 2020. During the clinical trials, we will be working with manufacturers to discuss and manage the details of production. Once the clinical trials are complete, the device will be immediately available for patients. 3. Is there anything that our patients can do to assist with your efforts? The Kidney Project is an ambitious project and is not without its challenges. In the short term, our primary challenge is funding the research. A significant hurdle is procuring enough money in order to proceed through the preclinical studies, which would allow us to build full-scale prototypes to generate data for the first round of in-human studies. NKI’s note- Eventually, patients will be needed for these studies, so be sure to check our website, and The Kidney Project’s website often to stay up to date! 4. What other innovative projects should we be aware of? What’s exciting about kidney research right now? Several teams have developed the idea behind a wearable artificial kidney (WAK), which translates the traditional dialysis machine into something that can be worn on a belt around the waist. It works by filtering a patient’s blood through a membrane. While it is much more convenient than conventional dialysis, it is does not perform all the functions of a healthy kidney. We are excited about The Kidney Project and the promise it holds for patients. By building on proven scientific successes in cell biology and silicon nanotechnology, we are engineering an implantable and self-regulating bioartificial kidney that does not require the patient to be tethered to a dialysis machine or take immunosuppressive medications. NKI will continue to monitor for any further developments of these projects. For more information on The Kidney Project, visit their website HERE.
Live Your Best Life With Nephrotic Syndrome! July 22, 2015 by Kylie Karley Coming this fall to a city near you: our freshened up patient workshop about “Living Your Best Life with Nephrotic Syndrome”! These FREE half-day seminars feature experts in Nephrotic Syndrome that can help you, and your family, live YOUR best life! Added bonus: a free kidney healthy lunch! Click on your city below to reserve your spot before it’s too late! Albuquerque, NM – Oct. 24 REGISTER Ann Arbor, MI – Oct. 24 REGISTER St. Louis, MO – Nov. 14 REGISTER Philadelphia, PA – Nov. 14 REGISTER RECENTLY COMPLETED WORKSHOPS: Charlotte, NC- Sept. 12 Cleveland, OH – Sept. 19 Austin, TX – Oct. 3 Baltimore, MD/ D.C. – Oct. 3
The Liposorber- An Innovative Device for FSGS July 22, 2015 by Kylie Karley Not too long ago, the Liposorber LA-15 System was approved by the FDA for use in pediatric FSGS patients that have tricky cases. This unique device offers a different type of treatment for patients: it cleans the blood of LDL’s, or the “bad cholesterol”. According to the FDA’s Press Announcement, “The device works by removing certain lipoproteins from the patient’s blood. The patient’s blood is first passed through a plasma filter where the blood cells are separated from plasma (the liquid component of the blood).” The Press Announcement goes on to cite studies that showed positive outcomes of patients that used the Liposorber System, including a study that showed patients excreted less protein after kidney transplant if they had treatment with the Liposorber System (compared to transplant patients that did not receive Liposorber treatment). Dr. Joshua J. Zaritsky, a pediatric nephrologist at Nemours/ Alfred I. DuPont Hospital in Wilmington, DE, believes in this innovative treatment option, saying, “I am hopeful we may be onto something with the Liposorber. I am beginning to get the feeling that the excess lipids we see in Nephrotic Syndrome are in themselves toxic to the kidney- this may explain why the machine works and provide another yet unexplored mechanism to help treat Nephrotic Syndrome/FSGS”. The Liposorber LA-15 System (is in) a post-approval study. If you are interested in learning more- be sure to ask your doctor and read more about the device HERE.
You’re Changing The Story- The New and Improved NKN! July 22, 2015 by Kylie Karley Announcing the new and improved NephCure Kidney Network (NKN) Patient Registry! Our updated survey helps you to tell your story, and it’s only a click away. www.nephcurekidneynetwork.org With just 30 minutes of your time you can become part of the movement that changes how research of chronic kidney diseases like FSGS and Nephrotic Syndrome is done. How? Step one is to join a patient-powered registry. NephCure has partnered with Arbor research to create a safe, secure, informed network for patients and their loved ones – just like you. We call this registry the NephCure Kidney Network, or NKN. How does it work? You spend about 30 minutes answering questions online. You will need to have some things on hand, like lab results. Remember, researchers and doctors need data to develop better treatment options, so the more detailed information you can provide the better. What happens next? When you complete the survey your data donation, is reviewed for completion and then de-identified, which means your name and other identifying information is removed, and is made available to researchers and clinicians studying and treating FSGS and the conditions that cause Nephrotic Syndrome. Your data donation provides valuable information that can change the face of research. Your donation may make it easier for researchers to determine if you could be eligible to participate in clinical trials, which can be anything from answering a survey to visiting a medical center for more involved studies. Your participation is completely voluntary. It’s been more than a decade since there has been a breakthrough treatment for kidney disease, and there are no FDA-approved treatments for FSGS and NS available today. As cases of chronic kidney disease continue to rise, we need to change that. Your data donation can help. Join the NKN today and join a movement to make a difference.