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/
Chicago is Walking for a Cure this Weekend! September 17, 2015 by wpengine Co-chair Sue Rogers walks for her son. The NephCure Kidney Walk returns for the 9th year to Chicagoland this Sunday, September 20th. The walk brings together Chicago area patients, friends, and family dedicated to raising awareness and vital funds to find improved treatment options and a cure for primary Chronic Kidney Diseases, including FSGS and nephrotic syndrome. The walk will be held at Centennial Park, 1776 W. Centennial Place, Addison, IL. Registration opens at 9 and the walk begins at 10 a.m. Music, food, and games will be held afterwards, plus fantastic raffle prizes, including a pair of tickets to the inaugural Countdown To A Cure Chicago fundraising gala themed Crusade For The Cure on Friday, November 6th at Architectural Artifacts at 4325 N Ravenswood Ave., Chicago. The walk is open to the public, but registration is encouraged in advance at Chicago Walk. The NephCure Kidney Walk is especially meaningful to Romeoville resident and walk organizer Sue Rogers, whose son has been dealing with Focal Segmental Glomerulosclerosis (FSGS) for over 11 years. “I love the support I have found from parents I’ve connected with through the walk,” said Rogers. “Some have been through so much already with their children, including dialysis and a kidney transplant. I admire their strength. Just being able to talk to another mom who understands what you are going through helps me maintain my sanity when I question myself how I’ll manage to handle it all.” Chicago native Aries Merritt won the bronze medal in the 110m hurdles in Beijing at the world track and field championships last month, with less than 20 percent kidney function caused by FSGS – days before receiving a kidney transplant. It is estimated that kidney disease affects 31 million people in the United States alone, with African Americans being 3 times more likely to experience kidney failure. Last year, 90,000 Americans were killed by kidney disease, more than breast cancer and prostate cancer. Some doctors believe kidney disease of this nature might be the next epidemic of our generation. Start your team today! Team fundraising is a great way to get your friends, family, co-workers and neighbors involved. Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. Cannot physically make the event? Maybe you have a wedding on walk weekend. Or your son or daughter has a soccer game. Maybe you’re moving to a new house. We get it. Fall can be a busy time. But remember just because you can’t make it to walk day, doesn’t mean you can’t keep the tradition alive and make an impact by fundraising in support of NephCure Kidney International. Leave your footprint as a Virtual Walker. Please join in the fun & fundraising and setup a Virtual Walk Team and share with your friends & family on social media. We need everyone’s involvement. You will still be able to earn the commemorative Walk T-shirt! Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. REMEMBER – You can still Fundraise for your Walk team AFTER the walk is over for the remainder of 2015. So it’s not too late! Share your Team Fundraising Page & Photos on Social Media! Make sure you share frequently your page and event photos on Facebook, Instagram, Twitter and with your email lists. Use the hashtags #Selfies4NephCure #NKIWalk #Chicago A special thank you to Chicago Walk Co-Chairs Sue Rogers and Julia Bacarella – We are thankful for all that you do! To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/Chicago or contact Jayne Drew at jdrew@nephcure.org
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.