Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
This is an online support group for patients, friends and families affected by Nephrotic Syndrome.
Nephrotic syndrome is a kidney disorder that causes your body to pass too much protein in your urine. Nephrotic syndrome is usually caused by damage to the clusters of small blood vessels in your kidneys that filter waste and excess water from your blood. Nephrotic syndrome develops when there is damage to the glomeruli, the structures in the kidneys that work to filter the blood. This damage allows proteins in the blood (such as albumin) to leak into the urine, causing increased excretion of protein (proteinuria). Eventually, blood levels of albumin become reduced. Accompanying abnormalities of kidney function lead to accumulation of fluid in the tissues (edema).
Many different disorders can cause damage to the glomeruli, resulting in nephrotic syndrome. In some cases, damage is confined to the kidneys alone. In other cases, organs other than the kidney are also affected (such as in diabetes mellitus or systemic lupus erythematosus)
In children, the most common cause of glomerular damage is a condition known as minimal change disease. In adults, approximately 30 percent of people with nephrotic syndrome have an underlying medical problem, such as diabetes or lupus; the remaining cases are due to kidney disorders such as minimal change disease, focal segmental glomerulosclerosis (FSGS), or membranous nephropathy.
Minimal change disease is a kidney disease that can occur in both adults and children. People with minimal change disease have normal or very mild abnormalities of the glomeruli.
Focal segmental glomerulosclerosis — FSGS is the most common cause of nephrotic syndrome in adults. FSGS causes collapse and scarring of some glomeruli. The cause of primary FSGS is unknown, although some cases (usually in children or young adults) are the result of a genetic defect, an infection, or a toxic response to a drug.
Membranous nephropathy — Membranous nephropathy is a condition in which the walls of the glomerular blood vessels become thickened from the accumulation of protein deposits, causing increased “leakiness.” It is not clear why membranous nephropathy develops in most people, but an “auto-immune” mechanism is suspected.
LivingWithNephroticSyndrome.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. ButLiving with Nephrotic Syndrome Patient Support Community is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
Visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google. Thus your speech here should be considered “public”. If you’re tempted to write something about another person that you wouldn’t say to their face, then we counsel you to think first. Speech can be consequential.
Living with Nephrotic Syndrome Patient Support Community is supported by unpaid volunteer moderators who validate and register new members and monitor ongoing discussions, photo postings and Blogs. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community who may be well-informed about the state of medicine and research.