The Unique Adult Experience December 15, 2015 by Kylie Karley Living Your Best Life with Nephrotic Syndrome By Bernadine Watson Contributor to Washington Post, FSGS patient, wife, mother CLICK HERE to watch “The Unique Adult Experience” Webinar held last week and hosted by Bernadine In 1984, I was thirty-three years old and dealing with all of the stresses of being a single, working mother of an adolescent boy. During a routine physical, my doctor added another worry to my plate. “You have excess protein in your urine” she announced at the end of our visit, sounding somewhat surprised. She had been my doctor a while and I was always very healthy. “I suggest you see a nephrologist,” she continued. “A small amount of protein in the urine is normal, but the amount you have could be a sign of kidney disease.” Kidney disease, I thought to myself. But I’m only in my thirties and feel fine. I had every reason to feel a bit fatigued, given my responsibilities, but I didn’t believe I could have a serious illness. As far as I knew kidney disease didn’t run in my family. Most important, I didn’t have time for kidney or any kind of disease. Within a few weeks, however, I saw a nephrologist and was diagnosed with a kidney disease I had never heard of and could hardly pronounce: Focal Segmental Glomerulosclerosis or FSGS as it’s called by those in the know. Thirty-one years have passed since my diagnosis. During that time I’ve had what one of my doctors calls “a pretty good dose” of FSGS. I’ve had two kidney transplants, spent five years on dialysis and suffered the pain, complications, inconvenience and sometimes embarrassment associated with having the disease. I know the terrible leg cramps, fatigue and nausea that can accompany dialysis; and the awful swelling, weight gain, bone loss and anxiety that can result from taking anti-rejection medications. There have been times when the surgeries, pills, scars and doctors’ appointments have seemed unbearable. The truth is, FSGS has been a constant companion for nearly half of my life. How in the world can you live your best life when you have a disease that can make you miserable and has actually tried to kill you? Honestly, there are days when I know I won’t be at my best. I may not feel well physically or may not be emotionally ready to deal with the world. On these days, I just do my best to muddle through. However, I find that I have fewer “bad” days since I’ve learned to make peace with FSGS. I’ve decided I want to live as well as I can, despite the fact that I have a chronic illness. Over the years, I’ve developed a few strategies for dealing with the physical, mental and emotional challenges of this disease. There is no magic involved but on most days these strategies help me do pretty well. 1. Put Yourself First. This may take a while to learn and may sound impractical or even selfish. We all have jobs, families and other responsibilities that come with everyday life. Many of us put others’ needs above our own, even when we don’t feel well. I believe, however, that I am no good to anyone if I am always worn out or sick. Putting yourself first means, asking for help from those around you; turning down request from others if you have too much on your plate or are not feeling your best; taking time off from work if and when you have the opportunity; avoiding people and situations that cause you stress and finding quiet time for yourself. You’ll be amazed at how much better you’ll feel if can do even a few of these things. 2. Take Full Responsibility For Your Health Try handling your own health care like you would handle care for any other loved one, like our mother or our child. Come to medical appointments on time and prepared to discuss issues that concern you. You and your nephrologist should be on the same team and have the same goal: keeping you as healthy as possible. Act like a member of the team. Ask any questions you have about your treatment. Ask for help in accessing any specialist you need to help you deal with this disease. Over the years, I’ve asked for and received referrals to nutritionists, orthopedists, physical therapists, mental health counselors and a psychiatrist—all to treat conditions related to FSGS. Make sure you always have enough of your medications on hand and take them as prescribed. Be insistent with you medical team about responding to your requests for refills, since you, not they, will be the one who has to bear the consequences of missing doses of your medications. Take the time to understand the side effects of your medicines and get help from your doctor in managing these effects. Don’t suffer if you don’t have to. 3. Take Good Care of Yourself Taking good care of yourself is always a good idea, but especially if you have a chronic illness. One of my favorite things to do for myself is to take naps. Naps help boost my mood and combat fatigue caused by my disease and some of the medications I have to take. While I realize that physical activity isn’t everyone’s favorite thing, try to find exercises that you enjoy or at least can tolerate. I’ve found exercise to be a necessity, not a luxury. While I’ve always been physically active, since being diagnosed with FSGS, I’ve become more intentional about my fitness routine. I love yoga and find that it has made me stronger and lifts my spirits. I also lift weights and ride a bike to support my heart and bones. Walking is a terrific activity that is easy and has many benefits. Exercise will help you look and feel better and can help counter some of the weight gain caused by transplant medications. Of course watching what and how much you eat is critical. I struggle with this all the time. Prednisone makes me ravenous and sometimes I find myself eating something before I even realize what it is. Fortunately, exercise helps. So does reminding myself that my diet and weight have a direct impact on health. 4. Enjoy Your Life Living with Nephrotic Syndrome is tough and can take a significant physical and emotional toll. Try to remember that this disease is something that happened to your body. You are not the disease and you did nothing to deserve it. Find ways to enjoy your life and do the things you like to do. Listen to music, read books, go to the movies, volunteer at your church or in the community, get dressed up and go out with your friends. I find that doing the things I love reminds me that I am still me, in-spite of FSGS. I want to live my best life!
The NephCure Kidney Network Patient Registry (NKN) December 15, 2015 by Kylie Karley GOAL: To collect patient-reported information from NS patients all over the world in a centralized location that will be easily accessible for researchers. By encouraging patients to join and share their health information themselves, the NKN tries to empower the patient community and engage them meaningfully in the research process. The NKN can also help connect patients to clinical research opportunities that they may be interested in. WHO CAN PARTICIPATE: Any patient with a Primary Nephrotic Syndrome condition can participate, from anywhere in the world. In fact, the NKN has participants from 33 countries! COMMITMENT: Participants spend 30-45 minutes after consenting to share their information answering surveys online about their medical history, their preferences about research, how they feel, and their family background. Participants are then asked to update their information every 6 months, and can choose to receive information about research studies that they may be interested in. WHY IT IS IMPORTANT: The NKN is a useful tool in connecting patients to research studies, thus allowing research to happen faster. The information provided by patients in the NKN can also influence what research is conducted, making sure that patients’ have a say in the process. Finally, the NKN is a patient-powered research network, and encourages patients and their families to pay attention to research and be more involved. We are currently close to reaching 500 participants in the NKN- register today and help us meet that goal by the end of the year!
NephCure Accelerating Cures Institute (NACI) December 15, 2015 by Kylie Karley GOAL: To create a thorough database of clinical information (Electronic Health Records) from all patients that suffer from a primary NS condition. The information in this database can be used to find the best standards of care and the best treatment options for patients living with these diseases. It will also speed up the development of new treatments. WHO CAN PARTICIPATE: Any patient seen at a NACI site can consent to share their electronic health records. Currently, there are NACI sites in Ann Arbor, MI, Charlotte, NC, and Los Angeles, CA. Over the next few years, NACI will expand to include 30 sites globally. Check here for updates about new sites. If you are not near a NACI site, being a part of the NephCure Kidney Network is a step you can take to help reach the same goal! COMMITMENT: Once patients agree to share their electronic health records with NACI, the NACI team does the rest! The commitment for patients is minimum. WHY IT IS IMPORTANT: NACI is a very inclusive study – any patient with a Primary NS condition can share their information. By having patients share their electronic health records, doctors and researchers have access to a very detailed story of how the disease has progressed over time. They will be able to see which treatments work best for different types of patients. This information can be used to create research projects that are meaningful to patients. The information collected through NACI will also help us count the number of people living with a Primary NS condition and speed up the drug development process.
Midwest Pediatric Nephrology Consortium (MWPNC) December 15, 2015 by Kylie Karley GOAL: To promote high quality standards of care in pediatric nephrology by encouraging doctors to work together and think about and discuss research that will benefit patients. MWPNC also works to encourage younger doctors to be involved in research and high quality patient care. WHO CAN PARTICIPATE: Doctors from 63 medical centers across the country (not just the Midwest, despite the name!) participate in this network to ensure high quality pediatric care. See if your doctor is part of the network by clicking here. There are many MWPNC sponsored studies seeking patient volunteers that can potentially benefit the care and treatment of NS patients including : Randomized Trial Comparing Rituximab Against Mycophenolate Mofetil in Children Wtih Refractory Nephrotic Syndrome (RAMP) Adrenocorticotropic Hormone (ACTH) for Frequently Relapsing and Steroid Dependent Nephrotic Syndrome MWPNC also sponsors a patient registry specific to pediatric nephrology patients, called Childhood Nephrotic Syndrome Observational Study (CNOS). CNOS collects electronic health records from patients that agree to share them and will help advance the knowledge of how NS progresses in children. COMMITMENT: Doctors commit to meeting twice a year for 2 days at each meeting to specifically discuss pediatric nephrology research. Commitment for patients varies depending on the opportunity that they choose. Each study asks for a different commitment, which may include regular visits to a medical center, taking a medicine that is being tested for effectiveness, and additional bloodwork or other procedures. CNOS asks for participants to share their electronic health information and spend time, either in person or over the phone, answering additional questions about your health and how you feel. WHY IT IS IMPORTANT: As a result of the MWPNC collaboration, 32 articles have been published, with 9 of them being published this past year. MWPNC has sponsored and published studies about vitamin D, blood clots, acute kidney injury and patient reported outcomes in children with nephrotic syndrome. The collaborative effort of the MWPNC ensures that nephrologists are aware of the most current research, and that opportunities are available for doctors to work together to find answers to questions that will help make better treatment and better patient care become a reality.
Cure GN (Cure Glomerulonephropathy) December 15, 2015 by Kylie Karley GOAL: CureGN is a large multi-center, long-term observational study of patients with Nephrotic Syndrome and other glomerular diseases, which aims to improve the diagnosis, treatment and outcomes of patients affected by these diseases. This study, which began patient enrollment from 64 clinical sites in December, 2014, will follow 2,400 patients with Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), membranous nephropathy (MN), or IgA Nephropathy/Henoch Schonlein Purpura. WHO CAN PARTICIPATE: Adults and children seen at a CureGN site (click here for list) with one of the four diseases (FSGS, MCD, MN or IgA Nephropathy/HSP) diagnosed by kidney biopsy may be eligible. The kidney biopsy must have happened within the past 5 years. COMMITMENT: Participants spend an extra 15-20 minutes at their normal nephrologist appointments and answer questions about health history and how they are feeling. Participants are seen at least once per year in-person and additional study visits can occur by phone. For each in-person visit, participants are asked to give a blood and urine sample. WHY IT IS IMPORTANT: CureGN is currently the largest network of clinical sites enrolling patients in a single observational study for Nephrotic Syndrome. CureGN plans to follow these patients for many years to understand long term impacts of the disease and what treatments are effective.
FAQ’s about the Consortia Research Networks December 15, 2015 by Kylie Karley Q: Other than providing data to researchers to fuel breakthroughs, how does my participation in one of these networks benefit me in the short term? A: An added benefit of donating your data to research is that the process enables you to get organized and take control of your health and disease. By tracking and recording your information in an organized way, you can become more empowered and feel more confident in the decisions that you make. Another perk of being a part of a consortia is that you gain access to leading researchers who are at the forefront of the field. Q: How do I know if I am participating in one of these research networks? A: To participate, you should have gone through an informed consent process, in which you reviewed a document (possibly with a study coordinator) that explained the risks, possible benefits, and requirements for participation. After the consent process, you likely answered many questions about your Nephrotic Syndrome history, and you may have even given a blood sample! Sometimes, you answer these questions at the end of your normal appointment, or you might go to an appointment just to answer these questions. If none of this sounds familiar to you, click here to learn about consortia opportunities and a site near you, or register with the NephCure Kidney Network at www.nephcurekidneynetwork.org. Q: I’ll participate, but I want to remain anonymous. Is that possible? A: Privacy is extremely important, and many steps are taken to ensure that your privacy is protected. All research studies have specific sets of rules that are followed to protect your privacy, and these rules are set forth and reviewed by an Institutional (or Independent) Review Board (IRB). You can learn more about IRBs here, and you can also talk to the study coordinator to learn exactly what steps they will take to ensure your privacy. Q: I’m not sure I have time to do this- how long does it take? A: All efforts are made to ensure that it is relatively easy for patients to participate in these opportunities. Many times, enrolling in a consortia can be part of your regular appointment- adding 15 -30 minutes to your normal appointments. Sometimes, you can answer questions over the phone to fulfill your commitment. Some opportunities require minimal input from you after the consent process, such as NACI. Other opportunities can be completed on your own time, such as the NKN. Whatever your time restriction is, there is definitely an opportunity for you to contribute to finding better treatments and cures. Q: Is there a cost to participate? A: There is no cost- researchers just need your participation! Q: Why is it important for me to do this? A: Nephrotic Syndrome is very complicated, and is different for every person. Researchers need to have the most complete collection of information possible to be able to draw accurate conclusions that will benefit the patient community. Participating in one of these opportunities will fuel breakthroughs in the research process that can ultimately lead to better treatments or cures.
2015 Countdown to a Cure – THANK YOU! November 20, 2015 by Lauren Eva We’ve said “hello” and “goodbye” to another Countdown to a Cure… From the beautiful scenery of New York City’s Chelsea Piers, to the heartfelt speeches delivered by NephCure’s beloved family, the Jones’ and honoree, Olympic athlete Aries Merritt, this event was truly the “Chance of a Lifetime” to make a difference in the fight against Nephrotic Syndrome. The success of Countdown has always been measured by the generosity of the many hundreds in attendance who consistently show support for NephCure and this year, our expectations were overwhelmingly exceeded, for which we could not be more grateful. You are changing the story. Energies were high and attendees were excited, lighting the way for one of the most successful galas in NephCure history. “Fund a Cure” donations blew expectations out of the water, bidding was at a high and the second annual game of “heads or tails,” brought a touch of silliness to an evening surrounding a very serious cause. Emcee, Moody McCarthy, along with “Asbury Fever,” a Bruce Springsteen Tribute band, kept the party going all night long with many moments filled with laughter, dancing and mingling. As always, we want to thank the committee who worked so hard to put this event together and the volunteers who generously gave up their time to help this event flourish into a huge success. The 2015 New York Countdown to a Cure raised over $750,000 and many left the event feeling inspired and hopeful. Finally, thanks to YOU. To each of you reading this who’ve decided to join us in this fight. We can’t do this alone. We need you, we’re grateful for you and we thank you.
11th International Podocyte Conference November 19, 2015 by Lauren Eva Click above to visit the Podocyte website and register!
NephCure Kidney Walk Returns to Houston Area Saturday, November 14th November 10, 2015 by wpengine Houston, TX (November 10, 2015) – The NephCure Kidney Walk returns to the Houston area this Saturday, November 14th to a new location in The Woodlands. The walk brings together Houston 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 Alden Bridge Park – The Woodlands, 7725 Alden Bridge Dr, Spring. Registration opens at 9 and the walk begins at 10 a.m. Immediately following, there will be fantastic raffle prizes and a silent auction with the chance to win tickets to the Houston Astros. There is no registration fee, although teams are encouraged to raise at least $500, with a total event goal of $20,000. The event is open to the public, but registration is encouraged in advance at support.nephcure.org/Houston. Local walk participant Trista Vigil will again be participating in the Houston Walk and asks that you join her this Saturday. “Why NephCure?”, says Trista. “Because it’s personal! It was early May of 1998, just days away from my 14th birthday and I noticed significant swelling in my eyes, lower extremities, and torso. After a doctor’s visit, a hospital stay, and a trip to a pediatric nephrologist 3 hours away from my home town I was told that I had nephrotic syndrome. My official diagnosis of minimal change disease wasn’t “official” until my first biopsy in 2007.” “It was in 2005 that I came across NephCure while doing some online searching about the disease itself.” remembers Trista. “NephCure’s website had so much information. It was about 2 years later that I got involved, I was involved when the Colorado chapter was started and it was amazing to meet people who knew what I was going through. Up until that point I had never met anyone elsewho had MCD, NS, or FSGS. It was wonderful to know that there were people out there that wanted to make my life better by saving kidneys and saving lives!” I recently had a biopsy in October of 2015 and my diagnosis is still the same, which is a relief, but this disease still impacts my life on a daily basis. Every relapse is heartbreaking. Like most people I want a cure, I want better treatments, I want to save my kidneys. NephCure is helping and I am so grateful and honored to be part of the discussions, part of the NephCure Walks, part of NephCure. I have met some amazing and inspirational individuals through NephCure, I just wish we didn’t all have in common what we have in common.” 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. To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/houston or contact Jayne Drew at jdrew@nephcure.org About NephCure Kidney International NephCure Kidney International (NKI) is a 501(c)(3) tax-exempt public charity established in 1999. Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, NKI is the only organization committed exclusively to supporting research to identify the cause, improve the treatment, and find the cure of the two potentially debilitating kidney diseases, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). ####
NKI Grand Rapids Walk October 18th October 15, 2015 by wpengine Grand Rapids, MI – The NephCure Kidney Walk returns for the 4th year to the Grand Rapids area, Sunday, October 18th. The walk brings together 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 Millennium Park, 1415 Maynard Ave SW in Walker, MI. Registration opens at noon and the walk begins at 1 p.m. There is no registration fee, but teams are encouraged to raise at least $1,000, with a total event goal of $10,000. The event is open to the public, but registration is encouraged in advance at support.nephcure.org/GrandRapids. The NephCure Kidney Walk is especially meaningful to local residents and co-chairs Heather Luchies and Tressa Hollinger. Both of whose lives and families are impacted by these conditions. “Being involved in the planning of this walk is my way of giving back to NephCure, who are working hard to find a cure for my disease”, says Heather. “Plus I find it helps “embrace” my disease rather than sit on the couch and do nothing about it.” Both Heather & Tressa will be on their local Fox 17 station this Saturday morning at 7:40 to do a live interview about the NephCure Kidney International Walk this Sunday. “This is what I’ve wanted since we partnered with NephCure and started the walk” says Tressa. “More awareness to find a CURE! Let’s rock this Heather Luchies!” To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/GrandRapids or contact Jayne Drew at jdrew@nephcure.org