Welcome to our kidney disease patient-education website!

If you or a loved one has been diagnosed with kidney disease, you may have many questions and concerns about your condition. This website (portal) provides accurate and up-to-date information about certain types of kidney diseases (glomerular diseases), including their causes, symptoms, and treatment options.

Kidney disease occurs when the kidneys are damaged and cannot properly filter waste and excess fluids from the blood. It can be acute, meaning it develops suddenly, or chronic, meaning it develops over time. Various factors, including infections, autoimmune diseases, diabetes, and high blood pressure, can cause kidney disease.

Symptoms of kidney disease may include swelling in the face, hands, or feet, foam or blood in the urine, high blood pressure, and fatigue. Treatment may include medications to reduce inflammation, control blood pressure, or manage diabetes, and lifestyle changes to protect the kidneys. In severe cases, dialysis or a kidney transplant may be necessary.
We hope that the information on this website will help you understand your kidney disease and how to manage it. If you have any questions or concerns, please don’t hesitate to contact your healthcare provider.

What are Glomerular diseases?

Glomerular diseases are a group of health conditions affecting the kidney’s small structure that is crucial in filtering waste and excess fluids from the blood (called the glomerulus, a tiny filter like a spaghetti sieve – each kidney has approximately 1 million of them).

Various factors, including infections, autoimmune disorders, and inherited genetic mutations, can cause these diseases.

Symptoms of glomerular diseases may include swelling, protein in the urine (foamy urine), high blood pressure, and decreased kidney function. These conditions can be serious and may lead to kidney failure if not treated promptly and appropriately.

When inflammation is part of the disease presentation, we refer to it as glomerulonephritis (GN). Examples include post-strep glomerulonephritis, lupus nephritis, IgA nephropathy, and others.

Sometimes, there is no inflammation. For example, one of the most common causes of glomerular diseases is due to diabetes. In this condition, damage to the tiny filters (glomerulus) occurs without direct inflammation. Other examples include Alport syndrome, membranous nephropathy, minimal change disease, focal segmental glomerulosclerosis (FSGS), and others.

The injury to the kidney (and the glomerulus) from inflammation or many other possible causes can lead to scarring and damage to the glomeruli, leading to problems with the kidneys’ ability to filter waste and excess fluids from the blood.

Treatment may include medications to reduce inflammation and control blood pressure and lifestyle changes to protect the kidneys. In severe cases, kidney replacement therapy, such as dialysis or kidney transplant, may be necessary.

A large number of glomerular diseases are due to autoimmune conditions.

Autoimmune glomerular diseases affect predominantly young patients who are otherwise healthy.

According to the Centers for Disease Control and Prevention, approximately 10% of the adult U.S. population has kidney disease. Kidney disease can have many different causes. High blood pressure and diabetes are the two most common causes of kidney disease in the United States. However, some experts question whether high blood pressure is a common cause of kidney disease and raise the question that this diagnosis often obscures subtle immune-mediated glomerular disease.

In addition, more than 100 different types of glomerular diseases, some inherited, and some acquired, can affect the kidneys. The majority of these diseases can be considered rare diseases.

One in 10 Adults Have Kidney Disease

Glomerular diseases...

make up the majority of kidney disorders

are the leading cause of dialysis dependence

more than 100 distinct diagnosis & variations of have been discovered

Unfortunately, rare diseases are notoriously difficult to diagnose and treat. There are many reasons why this is the case, and perhaps one of the most important is the difficulty for clinicians and scientists to meet enough patients to study their disease and outcomes.

Patients often struggle to find more information about their disorders due to their rarity and complexity. Through this patient portal, a group of kidney doctors would like to develop educational material for patients to access. Further, we would help patients connect via a patient forum and virtual coffee hours to share their experiences and mentor each other.

If you are a patient or patient caregiver and have a general question about our programs or would like to get involved, please contact us at info@glomcon.org.

Please note that we do not give medical advice. This portal is solely for general lay education and patient-to-patient connection.  

Who is affected?

Autoimmune-mediated glomerular diseases affect patients of all ethnicities, with a predominance toward young and otherwise healthy patients. However, adults and older patients can be affected as well.

As mentioned above, high blood pressure and diabetes are the two most common causes of kidney disease in the United States. When diabetes affects the kidneys, it is often an injury to the glomerulus (doctors refer to it as diabetic glomerulopathy). Each kidney has approximately 500,000 to 1,000,000 glomeruli or as we say “Gloms.” These Gloms are barely visible but are one of the most complex filters nature has ever built. Blood flows through them and gets filtered 24 hours, seven days per week. These filters are so delicate that injury to only a fraction of them can lead to “leakage” of protein or blood in the urine. Indeed, protein in urine can often be the first measurable sign of damage from diabetes to the human body. In addition to diabetes or high blood pressure, more than 100 different types of disease also affect the Glom and can lead to protein or blood in the urine.

High risk patients

Autoimmune-mediated glomerular diseases can complicate pregnancies and put mother and fetus at risk for adverse outcomes. Early diagnosis, pre-planning, and multidisciplinary care provided by experienced clinicians are critical. 

Ongoing damage to the Gloms can ultimately lead to irreversible scarring of the kidneys. Kidney doctors can treat some forms of kidney disease. It is essential to know that chronic kidney disease does not cause symptoms early on. The only way to tell if someone has damage to the Glom or has kidney disease is through blood and urine test. Luckily, there are treatment options for several forms of kidney disease, and often the progression of chronic kidney disease can be slowed or prevented.

Long-term outcomes

Barriers to early diagnosis are numerous and treatment options are scant. Nevertheless, kidney doctors often can improve the outcomes of patients with glomerular diseases and ensure a long and meaningful life.