Rare Disease Day February 29, 2016 by Lauren Eva Rare Disease Day 2016 By Patricia Colbert February 29 is a rare day, only getting a place on the calendar once every four years. It has a sunrise, sunset, and lasts 24 hours like all the other 365 days of the year. Yet, since it is an abnormality, it is rarely spoken of when it is not leap year. It makes perfect sense that Rare Disease Day is observed February 29 (February 28 on non-leap years.) To those of us who have a family member with a rare disease, we understand what it’s like to feel forgotten at times. Our loved ones have life-threatening illnesses, yet they do not receive the same respect as patients fighting diseases that are widely publicized. We spend more vacation days in a hospital room than a hotel room. More of our time and income is spent on healthcare than recreation. Instead of enjoying novels, we read medical journals. Purchasing event tickets is always a gamble as they often go unused. Any type of excursion requires extensive, detailed planning with military precision. Yet people have never heard of our disease. We have sacrificed for years, even not exchanging gifts at times, to pay for healthcare costs and treatments to keep our loved ones alive. We are glad when we see families receive immediate support when they battle a well-known disease; we support and even chair fundraisers for these diseases for we understand the struggle. We mourn the loss of family and friends from these illnesses and will continue to support research for all diseases. We just feel completely left out at times. It is very isolating when people seem indifferent to the severity of a life-threatening illness. We witness an unending paradox as the same people who post ice bucket challenge videos and wear pink in October often show no interest in supporting members of their own community. We watch a school support better-known diseases yet not support their own student when she fights for her life. We see teachers publicly rebuke students for doctor-excused absences and not having every assignment complete upon returning to class after emergency hospitalizations. Children and Youth Services was even called to the school and home of a student for missing school due to kidney failure. An apology after seeing the doctor’s excuse did not undo the severe psychological damage. The student softly said that maybe it would have been better if she had lost all of her hair during chemotherapy or if she had used crutches when walking caused her unbearable pain. Some people seem to think that a disease can’t possibly exist unless they have heard of it or can physically observe it. We don’t mind explaining our disease; we welcome the opportunity to spread awareness as misdiagnosis almost cost us our child’s life. She gained 16 lbs. of fluid overnight, some on her lungs, and fought for her life 17 days out of town, completely isolated from her friends. Instead of a Welcome Back sign when she returned to school, she found herself blacklisted. Bloated from her disease, my sweet nine-year-old was teased, bullied, and even accused of being pregnant. This led to an eating disorder, depression and low self-esteem. Despite testing that placed her at the very top of her entire grade in Math & English, she was suddenly overlooked for academic opportunities because the school decided the advanced work she had previously been provided was too much for her to handle. Consequently, she struggled with boredom and low self-confidence. I watched every girl on her sixth-grade cheer squad run right past her with overnight bags, laughing as they loaded into a van. Still walking, my girl stated, as a matter-of-fact, “I guess there’s a party.” It was our new normal. I thought high school would be better, but the cliques were even worse and having a rare disease that affected attendance and deadlines still made a student ineligible for academic opportunities and honors, regardless of qualifications. Some people became quite hostile when my child’s health was a higher priority than school. Most didn’t believe that medications and chemotherapy treatments affected my child’s ability to think clearly, despite the research that confirms it. One teacher actually yelled at me on the phone so loudly that my girl came in from another room with a bewildered look on her face. She was further victimized as her grade in that class dropped dramatically as a consequence of the hostility. Most rare diseases and their treatments compromise the immune system. Colds and virus are easier to catch and take longer to recover, especially when some over-the-counter medications cannot be taken. An illness may even cause a relapse of the disease. We cringe when someone coughs on us. Most medications have severe side effects, such as: fatigue, nausea, brain fog, mood changes, and excruciating pain; in addition, they have not been thoroughly tested on children. Patients see different doctors in different cities as they must also be treated for side effects of the disease and treatments. The physical impact of a rare disease alone is overwhelming; the mental, emotional, social and academic impact is often heartbreaking. My daughter even had a near-fatal reaction to a treatment, resulting in an emergency ambulance ride out of town and a week in ICU as she battled serum sickness. She is running out of treatment options. Unfortunately, thousands of people are fighting rare diseases. It can take years for a diagnosis and several more years to find the right treatment, if at all. Most rare diseases affect children, who are forced to grow up years ahead of their classmates and face trauma worse than many adults. The best, most understanding friends my girl has are fighting their own rare disease. These children are amazing, strong and care about others in a way that sets them apart. The best of our youth deserve better. Rare diseases deserve the same respect as familiar diseases. A child with Nephrotic Syndrome like my daughter deserves to be cured as much as everyone else. Most rare diseases have no cure. In order to find a cure, we need more funding for research. In order for these children to be treated more humanely, we must educate the public. This February 29, please remember Rare Disease Day. Make a donation to fund research for a rare disease. Research a disease that is unfamiliar to you, especially if affects someone you know. Contact a person with a rare disease and offer to help with homework, a chore, errand, or just to listen. The disease may be rare, but awareness should not be.
Regional Symposium Series January 28, 2016 by Lauren Eva NephCure Kidney International, in conjunction with leading institutions throughout the United States, presents a series of four regional Nephrotic Syndrome symposia. These one day events will engage glomerular disease researchers, clinicians, other healthcare professionals and patient families to foster new collaborations, improve management of care and address current research issues. • Course directors vary by location • CME (Continuing Medical Education) accreditation is offered • Corporate sponsorship opportunities are available Dates for 2017 Symposia: San Francisco, CA Friday, September 22 Charlotte, NC Friday, October 6 Houston, TX Friday, October 13
Ask the Expert – Nephrotic Syndrome 101 Webinar January 21, 2016 by Lauren Eva Click here to register!
Support Group Calls January 13, 2016 by Lauren Eva Nephrotic Syndrome Support Group Calls for Patients and Caregivers
Every gift has a story. November 23, 2015 by Lauren Eva Use new eCards to tell someone you love that you care about them.
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.
NEWS RELEASE: A Life Cut Short; Legendary Rugby Player Dies After 20-Year Battle With Kidney Disease November 19, 2015 by Lauren Eva KING OF PRUSSIA, Pa., Nov. 18, 2015 /PRNewswire-USNewswire/ — NephCure Kidney International is deeply saddened to hear of the passing of Jonah Lomu– a 20-year Nephrotic Syndrome patient, legendary rugby player, and all around wonderful person. Our thoughts are with his family, friends and many fans during this difficult time. Nephrotic Syndrome is a combination of symptoms that result when the kidneys fail to filter properly. The main indication of Nephrotic Syndrome is that protein leaks into the urine, which may cause swelling, fatigue, and scarring of the kidneys. Nephrotic Syndrome can occur because of rare diseases like Focal Segmental Glomerulosclerosis, Minimal Change Disease, or Membranous Nephropathy, which have no known cause or cure. Many Nephrotic Syndrome patients progress to end stage renal disease, requiring transplant or dialysis. A transplant is not always a cure for Nephrotic Syndrome patients, as the disease can reoccur in the new kidney. Like other chronic illnesses, Nephrotic Syndrome takes a toll on both the patient and family’s emotional well-being. Patients and their families often suffer from depression, which only adds to the burden of managing this devastating disease. NephCure Kidney International is leading the global effort to find better treatment options and a cure for Nephrotic Syndrome and the diseases that cause it. By bringing together leading scientists, world-class physicians, industry partners, and an international patient community, we leverage support and fund research to improve the lives of all those affected by Nephrotic Syndrome. Our thoughts are with Jonah’s family and all of the brave patients living with Nephrotic Syndrome. For more information, contact info@nephcure.org or visit www.NephCure.org Contact: Lauren Lee, 610-540-0186 ext. 32 SOURCE NephCure Kidney International
11th International Podocyte Conference November 19, 2015 by Lauren Eva Click above to visit the Podocyte website and register!