Welcome to Living with Nephrotic Syndrome Patient Support Community!
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.
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?
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.
Latest Discussions
- 📢 Calling mothers of children with rare diseases of all agesby ModSupport on August 12, 2023
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the […]
- Spotlight on Our Moderatorsby BF_Writer on March 30, 2023
Ben Munoz – October 31, 2019 When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own way! Some are very active in the conversation, and others take a more hands-off approach, intervening only when there might be a problem. We think […]
- “Rare Diseases Doesn’t Have Us” – Foot and Float to Raise Awarenessby BF_Writer on March 29, 2023
Ben Munoz – August 15, 2019 We did It! Ten Ben’s Friends members traveled for more than 500 miles on foot and afloat to raise awareness and to raise money to start new Ben’s Friends Communities. This proves that although “WE HAVE RARE DISEASE -RARE DISEASE DOESN’T HAVE US”. We started the night before departing for Glacier National […]
- When “Rather Rare” Becomes “Done Well”by BF_Writer on February 22, 2023
Ben Munoz – November 1, 2019 I remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for 41 years now. When it was first discovered no one within 500 miles knew what it even was, let alone how to treat it. He says that it was a very scary time. Not only because of major surgery as an 8th grader but […]
- Our New Ben’s Friends Classroomby BF_Writer on January 25, 2023
Clasina Field – November 1, 2019 You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library where our Moderators and Interns will be able to learn the skills and tricks of the Moderator Trade. Right now, I’m about to stock our library with reading material and things like Slide […]
- Spotlight on Our Board Member: John Stamlerby BF_Writer on January 17, 2023
Ben Munoz – November 9, 2019 John Stamler, Ben’s Friends’ treasurer and a rare disease survivor himself, had a conversation with Garry Turner in the Episode 81 of Value through Vulnerability podcast. John shared his inspiring work as a mentor to startups and his admiration for the entrepreneurs he works with who are so passionate about what […]
