Nephrotic Syndrome
You are not the disease and you did nothing to deserve it - Bernadine Watson
image by: NephCure Kidney International
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The Unique Adult Experience
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…
Resources
Franklin Square family takes on kidney disease
Trachtman described nephrotic syndrome as one of the more difficult kidney illnesses to address because there has been comparatively little research into a cure for it. This is especially true with Jacqueline’s specific type of nephrotic syndrome, known as focal segmental glomerulosclerosis, or FSGS.
Explainer: what is the kidney disorder that Jonah Lomu had?
All Blacks rugby player Jonah Lomu has died, aged 40. Lomu died of a heart attack, thought to have been a complication of the rare kidney disorder he’d been suffering from for most of his adult life. The disorder, nephrotic syndrome, is a fairly rare disease with just two or three new cases per 100,000 of the population each year. But what exactly is it?
Five hundred years of the nephrotic syndrome: 1484-1984
The nephrotic syndrome has emerged over several centuries as the consequence of continued profuse proteinuria, arising in turn from a variety of lesions affecting the glomerulus which impair glomerular ability to retain plasma proteins, in particular, albumin.
Goodbye, nephrotic syndrome!
Obviously, a single case does not constitute proof. But the stories of success in our wheat-free lifestyle continue to pour out so quickly that there is insufficient time to pursue the clinical trials that confirm cause-effect relationship in every instance.
History of Nephrotic Syndrome and Evolution of its Treatment
Interestingly, ACTH is currently remerging as a potential treatment for nephrotic syndrome. In Europe, it is available as a synthetic depot formulation (Synacthen®) and in the US as a highly purified formulation (Acthar® gel) from porcine or bovine sources.
Jonathan Snyder – Nephrotic Syndrome
“When he was little, Jonathan didn’t know what ‘good’ felt like,” says Candi Snyder, describing her son’s life with nephrotic syndrome, diagnosed at age two and a half. “He didn’t have a clue.”
My New Kidney
NS is a rare disease syndrome, yet it is responsible for approximately 12% of all cases of end-stage renal disease (ESRD) and up to 20% of ESRD in children, at a cost of $4 billion in the U.S. alone.
The Unique Adult Experience
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?
NephcEurope
NephcEurope is a European wide working patient organization and foundation in the field of Nephrotic Syndrome. An organization built by international parents and patients in order to provide service and support to other patients or their parents. Not on a national basis but on a European basis!
NephCure Kidney International
NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, improve treatment, and find a cure.
NEPTUNE
The Nephrotic Syndrome Study Network (“NEPTUNE”) is an integrated group of academic medical centers, patient support organizations (the NephCure Foundation and the Halpin Foundation), and clinical research resources dedicated to advancing the understanding and treatment of Minimal Change Disease (MCD), Focal and Segmental Glomerulosclerosis (FSGS), and Membranous Nephropathy (MN).
The Nephrotic Syndrome Foundation
Working to support families, educate our community, and fight nephrotic syndrome
History of Nephrotic Syndrome and Evolution of its Treatment
Nephrotic syndrome, as we know it today, is a combination of proteinuria, hypoalbuminemia, hyperlipidemia, and edema, a concept that took some time to be developed. Interestingly, the effective treatments became available only recently in the mid 1900s, with the advent of steroids, antibiotics, diuretics, and other immunomodulators. Even today, there is a gap in our understanding of the etiology(s) of nephrotic syndrome of childhood, and better treatments are still required in the more resistant forms.
Membranous Nephropathy and Nephrotic Syndrome
This condition is one of the most common causes of nephrotic syndrome. It may be a primary kidney disease, or it may be associated with other conditions.
Nephrotic Syndrome Trust
We’re bringing nephrotic syndrome out of hiding. Shining a spotlight on it so that more people in more places can learn what it is, who it affects and how they can help.
Ada Health
Nephrotic syndrome is a collection of signs and symptoms which indicate that there is a problem with the kidneys. It is a syndrome rather than a disease.
National Institute of Diabetes and Digestive and Kidney Diseases
Nephrotic syndrome is a collection of symptoms that indicate kidney damage. Nephrotic syndrome includes the following: •proteinuria—large amounts of protein in the urine •hyperlipidemia—higher than normal fat and cholesterol levels in the blood •edema, or swelling, usually in the legs, feet, or ankles and less often in the hands or face •hypoalbuminia—low levels of albumin in the blood
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