What is livingwithnephroticsyndrome.org?
livingwithnephroticsyndrome.org is a dedicated patient-to-patient support community for patients and families affected by Nephrotic Syndrome. livingwithnephroticsyndrome.org is powered by BensFriends.org, a group of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Nephrotic Syndrome.
Who can join livingwithnephroticsyndrome.org?
If you or your family has been affected by Neprotic Syndrome, consider livingwithnephroticsyndrome.org your second home. livingwithnephroticsyndrome.org, as well as the rest of BensFriends.org’s patient communities, is free for members to join.
What is Nephrotic Syndrome?
Nephrotic syndrome may occur when the filtering units of the kidney are damaged. This damage allows protein normally kept in the plasma to leak into the urine in large amounts, which reduces the amount of protein in your blood. Since the protein in the blood helps keep fluid in the bloodstream, some of this fluid leaks out of the bloodstream into your tissues, causing swelling, called edema. The swelling may be most noticeable in your legs after you have been standing and around your eyes when you first get up in the morning. Eventually, the swelling in your legs may be there all the time, and it may also occur in other parts of your body. You may notice that your urine foams more than usual because of the amount of protein in it.
What is BensFriends.org?
In 2007, Ben Muñoz suffered a rare form of stroke caused by an Arterio-Veinous Malformation (AVM). He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.
BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, Bens Friends provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives. Bens Friends is supported by donations from its principals and community.