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About Us

Minimal Change Disease Patients

Our team is comprised of patients with Minimal Change Disease. We each have different experiences with diagnosis, symptoms, and treatment, but we're all passionate about sharing the latest news on Minimal Change Disease. We, like you, want the best information when making health decisions.

Latest News on Minimal Change Disease

We monitor all major health publications looking for new insights and learnings to share with this community. We understand everyone has a different level of current knowledge. To help with patients just beginning their journey, we've provided some important background info below.

Frequently Asked Questions

What is Minimal Change Disease?

Minimal Change Disease (MCD) is a kidney disorder that primarily affects the filtering units of the kidney called glomeruli. Glomeruli are responsible for filtering waste and excess fluid from the blood to form urine. Despite causing significant kidney dysfunction, the changes in the kidney structure are so subtle that they are difficult to detect under a regular microscope—hence the name "minimal change."

What are the symptoms of Minimal Change Disease?

Minimal Change Disease is the most common cause of nephrotic syndrome in children, though it can affect adults as well. Nephrotic syndrome is characterized by:

• Heavy proteinuria: Large amounts of protein leak into the urine.
• Hypoalbuminemia: Low levels of albumin (a type of protein) in the blood.
• Edema: Swelling, often in the legs, ankles, and around the eyes.
• Hyperlipidemia: Elevated levels of lipids (fats) in the blood.
• Patients may also experience fatigue, weight gain due to fluid retention, and in rare cases, high blood pressure.

How is Minimal Change Disease diagnosed?

There are three primary ways nephrologists will diagnose Minimal Change Disease:

• Corticosteroids (e.g. prednisone): This is the first-line treatment, and most patients, especially children, respond well. The disease can go into remission within weeks.
• Immunosuppressive drugs: For those who don't respond to steroids or relapse frequently, other drugs such as cyclophosphamide or cyclosporine may be used.
• Supportive treatment: Managing symptoms of nephrotic syndrome, such as using diuretics for edema, blood pressure medications, and dietary changes (e.g., reducing salt).

What are the treatment options for Minimal Change Disease?

There are three main categories of Minimal Change Disease treatment options:

• Urine tests: Show large amounts of protein (proteinuria).
• Blood tests: Reveal low levels of albumin and possibly increased cholesterol.
• Kidney biopsy: The kidneys often appear normal under a light microscope, but with more sophisticated testing (electron microscopy), the podocytes—cells in the glomeruli—show changes, specifically the effacement (flattening or thinning) of foot processes, which is characteristic of MCD.

What causes Minimal Change Disease?

In most cases, the cause of Minimal Change Disease is unknown. However, the condition is thought to be related to abnormalities in the immune system. Possible triggers for Minimal Change Disease include: infections (especially respiratory infections), allergic reactions, medications (e.g. nonsteroidal anti-inflammatory drugs or NSAIDs), and tumors (in adults, rarely linked with cancers like Hodgkin's lymphoma).

What is the life expectancy with Minimal Change Disease?

The life expectancy for someone with Minimal Change Disease is generally very good, especially when the condition is properly treated. The disease itself is not typically life-threatening, and most patients can lead normal, healthy lives. For children with Minimal Change Disease, the prognosis is generally excellent, with many achieving long-term remission. However, relapses are common. Adults with Minimal Change Disease may have a slower response to treatment, and there may be more frequent relapses, but the overall long-term outcome is still usually favorable.

How can you prevent a Minimal Change Disease relapse?

Preventing relapses in Minimal Change Disease (MCD) can be challenging, as relapses are common However, there are several strategies that can help minimize the risk of relapse and manage symptoms effectively:

• Strict Adherence to Medication: Most patients are treated with corticosteroids during both the initial episode and relapses. Following the prescribed steroid regimen is crucial, even after symptoms improve. For those with frequent relapses or who are steroid- dependent, other medications such as cyclophosphamide, cyclosporine, or rituximab might be prescribed. Proper adherence to these therapies is essential to prevent relapses.
• Lifestyle Modifications: Infections, particularly respiratory infections, are a common trigger for relapses. It's important to wash hands frequently, avoid people who are sick, and get all vaccines recommended by your doctor. While there's no specific diet to prevent Minimal Change Disease relapses, certain dietary changes can help including reducing salt intake.
• Monitor for Early Signs of Relapse: Monitoring protein levels in your urine at home with dipstick tests can help detect a relapse early, sometimes even before symptoms like swelling appear. Early detection allows for prompt treatment. Also be aware of early signs of swelling (edema) in the legs, ankles, or around the eyes.