Finding support for Nephrotic Syndrome? Connect with people like you.

Living With Nephrotic Syndrome is an online support community by BensFriends.org for patients with rare diseases and chronic illnesses. Ben’s Friends provides a safe space for patients, caregivers, and families to connect and support each other.

Nephrotic syndrome is a kidney disorder that causes excessive protein loss in urine due to damage to the glomeruli, which filter waste and excess water. This damage allows proteins like albumin to leak into urine (proteinuria), lowering blood albumin levels. As kidney function declines, fluid builds up in tissues, causing edema.

Many different disorders can cause damage to the glomeruli, resulting in nephrotic syndrome. In some cases, damage is confined to the kidneys alone. Organs other than the kidney, in other cases, 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. About 30% of adults with nephrotic syndrome have underlying conditions like diabetes or lupus; others have kidney disorders like FSGS.

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.

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How is Ben’s Friends Different from Social Media and Other Support Sites?

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.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

Why create an account in Living with Nephrotic Syndrome?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

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