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Kidney Disease FAQs

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Your kidneys are vital organs. They filter and clean your blood and remove waste by making urine. Your kidneys also do other crucial jobs, including:

  • Control chemicals and fluids in your body
  • Help control your blood pressure
  • Help keep your bones healthy
  • Help your body make red blood cells

Having kidney disease means your kidneys are damaged and cannot do their job as well as they should. Kidney disease does not happen overnight—it is the result of a gradual loss of kidney function. Specific lifestyle changes and other treatments can help prevent or slow damage to the kidneys.

Risks for developing kidney disease include:

  • Diabetes (type 1 or 2)
  • High blood pressure
  • Heart and blood vessel diseases (cardiovascular disease)
  • Smoking
  • Obesity
  • Being Black, African American, of African descent, American Indian or Alaskan Native, or Asian American or Pacific Islander
  • Family history of kidney disease
  • Abnormal kidney structure
  • Older age
  • Recreational drug use (such as cocaine, marijuana, and methamphetamine)
  • Damage to kidneys from certain medications such as chemotherapy drugs, certain over-the-counter pain relievers, non-steroidal anti-inflammatory medicine (such as ibuprofen) and overuse of prescription pain medication

Why are Black and Brown people more at risk for kidney disease?

Black Americans are almost four times as likely as White Americans to develop kidney failure. While Black Americans make up about 13% of the population, they account for 35% of people with kidney failure in the United States. Diabetes and high blood pressure are the leading causes of kidney failure among Black Americans. Genetic variants in people who are African American, Afro-Latino, Afro-Caribbean or of African ancestry lead to a higher risk of kidney disease and faster kidney damage. Many people of African ancestry with hard- to-control high blood pressure and kidney damage have a variant of the APOL1 gene that causes their kidney disease. A kidney doctor, called a nephrologist, can help choose the best treatment options for a Black American with kidney disease if they know the patient has the high-risk APOL1 genetic variant. A growing number of Americans with Hispanic or Latino heritage are diagnosed with kidney disease each year. Since 2000, the number of Hispanic or Latino people with kidney failure has increased by more than 70%. Compared to non-Hispanic/Latino people, they are almost 1.3 times more likely to be diagnosed with kidney failure, often caused by diabetes and high blood pressure.

What are the most common symptoms of kidney disease?

Some symptoms of kidney disease are non-specific, meaning other illnesses can cause them. Sometimes, signs and symptoms may not appear until irreversible damage has occurred. Symptoms include:

  • Fatigue
  • Weakness
  • Nausea
  • Difficulty concentrating
  • Trouble sleeping
  • Dry, itchy skin
  • Frequent urge to urinate
  • Blood in the urine
  • Feeling cold when others are warm
  • Feeling faint or dizzy
  • Ammonia-like breath
  • Foamy or bubbly urine
  • Puffiness around the eyes
  • Loss of appetite
  • Swelling in the ankles and feet
  • Muscle cramps
  • High blood pressure
  • High cholesterol
  • Shortness of breath after minimal effort
  • Food tastes like metal
  • Pressure when you urinate

How can I have kidney disease if I feel okay?

Early on, kidney disease may not cause any symptoms because the damage to your kidneys is still mild. Your kidneys compensate for this damage by working even harder. Lab tests, including urine and blood tests, are the only way to detect kidney disease at this early stage. Most people do not notice symptoms until the kidney damage is severe, so it is essential to check your kidney function annually and know your genetic risk for kidney disease.

Is kidney disease inherited or passed on through family members?

You may be more likely to get kidney disease if you have a close relative with kidney disease. You get your genes from your parents, and your genes can also make you more at risk for (or help protect you from) diabetes, high blood pressure or kidney disease.

How do I get tested for kidney disease?

Kidney disease often shows no symptoms until your kidneys are irreparably damaged, meaning the only way to know how well your kidneys are working is to get tested. This process is essential for people who have diabetes, high blood pressure or a family history of kidney disease. Diagnostic tools may include:

  • Ordering blood tests to determine how well your kidneys filter waste by measuring your levels of creatinine (a waste product found in your blood).
  • Ordering urine tests to check for protein or blood in your urine.
  • Measuring your blood pressure. High blood pressure can both cause kidney disease and be caused by kidney disease.
  • Your doctor may order other tests as needed, such as x-rays, a kidney biopsy, ultrasounds or scans.

What should I do if I am diagnosed with kidney disease?

Gather your questions and ask your doctor about your condition and treatment. Ask what type of kidney disease you have and let your doctor know of any immediate family member who also has kidney disease, such as a parent, grandparent or sibling, or of other close family members, such as aunts or uncles. Telling your doctor about family members who have kidney disease or have been on dialysis or received a transplant is crucial so your doctor can better understand your kidney disease and how to treat it.

While we do not always know what causes kidney disease, determining the cause can help you find the best treatment. The main treatments for kidney disease are medications. Some medicines can stop further damage to your kidneys. Doctors will prescribe blood pressure medications to people with kidney disease. Other common medications used for treating kidney disease include prednisone (a type of steroid) and other immunosuppressants, which help to keep your immune system in check. If your kidneys are severely damaged, your doctor may prescribe dialysis treatments and/or a kidney transplant. There are currently several new medical therapies for treating kidney disease in development and tested through clinical trials. Participating in a clinical trial is another option for you and your doctor to consider while treating your kidney disease. You will be closely monitored and will have better and more frequent access to expert care. 

Is there a cure for kidney disease?

There is no cure for chronic kidney disease at this time, but treatment can help relieve the symptoms and stop them from getting worse. Your treatment will depend on the stage of your chronic kidney disease. The main treatments are lifestyle changes in order to help you stay as healthy as possible.

Why is maintaining healthy blood pressure important to controlling kidney disease?

High blood pressure can damage the blood vessels in your kidneys. If the blood vessels become damaged, your body cannot deliver enough blood to the filters in your kidney, causing the filters to weaken or harden. Elevated blood pressure causes parts of your kidney to stop working, meaning it can no longer remove wastes and extra fluid from your body. For most people, their blood pressure should be kept at 120/80. Ask your doctor for your specific blood pressure goal.

How can I protect my kidneys?

The following are some tips to protect your kidneys and keep them healthy:

  • Keep active and fit.
  • Control your blood sugar (under a doctor’s supervision).
  • Monitor your blood pressure. The normal range is 120/80.
  • Monitor your weight and eat a healthy diet. Work with a certified dietitian.
  • Drink plenty of water and refrain from sugary drinks.
  • Do not smoke.
  • Be aware of the number of over-the-counter medications that you take and let your doctor know.
  • Have your kidney function tested if you are at high risk.
  • Limit alcohol consumption.

Does kidney disease increase my risk for other health problems?

If your kidneys are damaged and not working correctly, you are at greater risk for other health issues. For instance, kidney disease increases your risk for heart disease and stroke. The kidneys also help make red blood cells that carry oxygen throughout the body. If your kidneys are not working as they should, your red blood cell level can drop too low, causing anemia. Having kidney disease can also lead to high levels of phosphorus and potassium in your blood. High phosphorous levels can drain your bones of calcium and weaken them. High potassium levels can increase your risk for heart rhythm problems, which can be dangerous.

What happens if my kidneys stop working?

Kidney disease can lead to kidney failure. Kidney failure means your kidneys no longer work, which causes toxins, waste products and fluid to build up in your body. There is no cure for kidney disease, but life-saving treatments are available if your kidneys fail. Dialysis is a treatment that filters your blood and removes toxins, waste products and excess fluids. You may also be a candidate for a kidney transplant. A kidney transplant is not a cure. It is a treatment and it allows many people to live longer.

What is a nephrologist?

A nephrologist is a type of doctor who specializes in diseases and conditions that affect the kidneys. They work to treat conditions such as chronic kidney disease, kidney infections and kidney failure. Not only do nephrologists have expertise in diseases that specifically affect the kidneys, but they are also knowledgeable about how kidney disease or dysfunction can affect other parts of the body.

How do I know if I need a nephrologist?

Although your primary care doctor will work to help prevent and treat the early stages of kidney disease, your doctor may refer you to a nephrologist to help diagnose and treat more severe or complex kidney conditions.

Understanding Lab Values

Click the button below to view a comprehensive list and an explanation of lab values that you may see as a patient with rare kidney disease.

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Why do you need to be familiar with your lab values?

For a patient with a rare kidney disease, understanding their lab values is paramount for several reasons. Firstly, it empowers the patient to actively participate in their own healthcare management. By comprehending their lab results, the patient gains insight into the functioning of their kidneys, allowing them to monitor changes and trends over time. This understanding fosters informed decision-making regarding lifestyle choices, medication adherence, and adherence to dietary restrictions prescribed by their healthcare provider. Moreover, it facilitates effective communication between the patient and their healthcare team, enabling discussions about treatment options, potential complications, and necessary interventions. Ultimately, a thorough grasp of lab values empowers the patient to advocate for their own health and collaborate more effectively with their healthcare providers in managing their rare kidney disease.

Finding the Right Doctor

Having a good doctor-patient relationship is crucial for managing the challenges that come with Rare Kidney Disease. With the right doctor by your side, you can feel more confident and supported in your health journey, which can make a big difference in your overall well-being.

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The Right Kidney Doctor Is:

  • Knowledgeable about your specific kidney disease
  • An active listener
  • Informed about recent kidney disease research and clinical trials
  • Takes time to answer your questions and concerns
  • Easily accessible
  • Honest, factual and provides a great bedside manner
  • Willing to have tough conversations with you
  • Acknowledges your role as an active member of your care
  • Includes you in the care-planning process and integrates your goals into your care plan
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Find Your NephCure Specialist Today

It’s essential to partner with a nephrologist who specializes in RKD and can offer personalized guidance tailored to your unique health needs and evolving treatment options. NephCure offers a carefully curated list of NephCure Specialists across the country who are ready to support you.

Find Your Nephcure specialist

Does Kidney Disease Run in Your Family?

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Does anyone in your family (including grandparents, aunts, uncles, or cousins) have kidney disease?

Do you have high blood pressure that is hard to control?

Are you Black, African American, Afro-Latino, Afro-Caribbean, or of African ancestry?

Family history can put you at risk for kidney disease. If you answered “yes” to one or more of these questions above, consider asking your doctor about a genetic test for kidney disease. Knowing your genetic makeup can help determine if you are at risk for kidney disease and, ultimately, may help delay or postpone your need for dialysis or kidney transplant. People who are Black, African American, Afro-Latino, Afro-Caribbean or of African ancestry are at higher risk than other groups for having variations of the APOL1 gene that are connected to early-onset kidney failure (meaning kidney failure that happens earlier in life than is typical, as early as childhood through young adult years).

Genetic testing is a type of medical test that identifies changes in chromosomes, genes or proteins. The results of a genetic test can confirm or rule out a suspected genetic condition or help determine a person’s chance of developing or passing on a genetic disorder.

Please talk to your family doctor or kidney doctor about the importance of knowing if you are at risk for genetic kidney disease. Also, ask your doctor to identify a trusted testing site where genetic testing is affordable

Genetic Testing Recourses:

Natera (www.natera.com)

APOL1 Gene Testing Services at Wake Forest Innovations (www.apol1genetest.com)

Rare Genomes Project (www.raregenomes.org)

Dealing with Insurance Headaches

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Nephrotic Syndrome patients have some unique challenges when dealing with insurance coverage for their treatments. Here are some tips to help you be your own best advocate when it comes to insurance headaches.

Challenges


Because NS diseases are rare, the insurance approval process may be slow or lead to confusion with insurance coverage. Often approval for some medications require specific disease codes.


Nephrotic syndrome is a chronic illness, and doctors often try prescribing a variety of medications until something is effective. Second opinions, ER trips and doctor visits add to the frequency and complexity of insurance interactions.


Many treatment options are off-label and many are expensive and unfamiliar to insurance companies.


Things You Can Do To Make It Easier

1

Become very familiar with your insurance policy: how do referrals, out of network services, prior authorizations, and off label treatments impact your claims? Knowledge is power!

2

Keep your records well-organized. This is especially important if you have to appeal a decision (and you probably will at some point).

3

Ask your insurer for a dedicated case manager – this person will become familiar with your situation and will be able to answer questions for you.

4

Don’t panic if your claim is denied – claims processors aren’t doctors (sometimes they’re actually computers) so errors are common. Often, a simple phone call can clear things up. If not, you have options to appeal

Congenital Nephrotic Syndrome & Infantile Nephrotic Syndrome

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Congenital Nephrotic Syndrome (CNS)

is a rare kidney disorder that begins at birth or within the first 3 months of life.

Infantile Nephrotic Syndrome (INS)

is also a rare kidney disorder that occurs between 3 months and 1 year of life.


Overview and Symptoms:

Focal Segmental Glomerulosclerosis (FSGS) is a rare kidney disease characterized by dysfunction in the part of the kidney that filters blood (glomeruli). Only some glomeruli are affected, but continued damage can lead to kidney failure.

Protein in the urine, which can be foamy (proteinuria)

Low levels of protein in the blood (hypoalbuminemia)

Swelling in parts of the body, most noticeable around the eyes, hands, feet, and abdomen (edema)

High Triglyceride levels

Can cause high blood pressure (hypertension) and high fat levels in the blood (high cholesterol)

Fast Facts


The majority of CNS and INS cases are caused by genetic changes that cause defects in the filtering units of the kidneys.


80% of CNS cases are caused by four different gene mutations: NPHS1 and NPHS2 (the most common types), PLCE1, WT1, LAMB2


2/3 of INS cases are explained by four gene mutations: NPHS1, NPHS2, LAMB2, or WT1.


The majority of CNS mutations (NPHS1 or NPHS2) are autosomal recessive diseases, meaning both parents are carriers of CNS and the possibility of having an affected child is 25% (or 1 in 4 children will have the disease).


NPHS1 is also known as the Finnish-type of CNS, and is most commonly found in people with Finnish ancestry. Non-Finnish individuals often have NPHS2 mutations.


Children with NPHS1 mutations are often born prematurely with low birth weight.


Infants with CNS may have failure to thrive, have frequent life-threatening infections, and be at risk for abnormal blood clotting.


Many CNS patients develop end-stage kidney disease develop end-stage kidney disease between ages 2 and 8, and require dialysis and transplant.


Biopsy findings usually indicate FSGS.


Some causes of CNS/INS are not genetic. Other non-genetic causes include infections such as cytomegalovirus, congenital syphilis, and congenital toxoplasmosis.

Treating Your Disease

Short-Term Goals

Supplement the protein spillage through albumin infusions, provide a high-calorie diet due to the risk for poor growth, and monitor for the development of anemia and hypothyroidism. Immunoglobulin replacement may also be needed if infections are frequent or severe. Often medications such as ACE inhibitors and nonsteroidal anti-inflammatory drugs may be used to slow the spillage of protein in the urine.

Long-Term Goals

Removal of the kidneys may be necessary with a need for dialysis until kidney transplantation can occur.

There are no FDA-approved treatment options for Congenital and Infantile Nephrotic Syndrome. Often, genetic forms of Congenital and Infantile Nephrotic Syndrome patients do not respond to steroids and most do not respond to immunosuppressant medications. Treatments are aimed at controlling the symptoms, such as swelling, high blood pressure, and high cholesterol, and reducing the risks of blood clots and infections. Many patients require a bilateral nephrectomy (removal of kidneys), need dialysis, and are referred for a transplant.

  • Genetic testing is a priority, after infectious screening is negative
  • Optimize nutritional intake with high-calorie and high-protein diet
  • Albumin infusions are often needed to manage swelling
  • Closely monitor intake and output

The Following Measures May Be Needed to Improve Health Outcomes:

  • Prevent infections and may need immunoglobulin replacement
  • Prevent high blood pressure
  • Prevent blood clots or thrombosis Prevent anemia
  • Prevent severe edema
  • Prevent dehydration
  • Prevent malnutrition
  • Thyroxine therapy for hypothyroidism

APOL1 Kidney Disease

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African Americans make up 13% of the US population but account for nearly 35% of people with kidney failure in the US.

NephCure is here to help change that. We are a nonprofit patient advocacy group dedicated to empowering people with APOL1 kidney disease, and other rare, protein-spilling kidney diseases, to take charge of their health while leading the revolution in research, new treatments, and care.

Fast Facts


1 in 8 African Americans is at risk of a genetic form of kidney disease (caused by the APOL1 gene mutations).


APOL1 kidney disease is particularly
aggressive and currently has no
FDA-approved treatments.


APOL1 kidney disease most frequently affects individuals of African descent (i.e., people who identify as Black, African American, Hispanic/Latino, or Afro-Caribbean) in early-mid adulthood.


Approximately 40% of African Americans on dialysis have kidney failure caused by APOL1.


You may be experiencing kidney disease and be unaware — 90% of people have no visible symptoms.

What is APOL1 Kidney Disease?

Every person inherits one copy of the APOL1 gene from each parent. Sometimes, there is a mutation in one or both of the APOL1 genes. Those who inherit two mutations of the APOL1 genes have 10x-30x the risk of developing kidney disease. These mutations are only found in people of African descent.

Partner with us to change the story of APOL1 and kidney disease in African American communities.

IgA Nephropathy (IgAN)

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Overview and Symptoms:

IgA Nephropathy (IgAN) is an autoimmune disease that affects the filters (glomeruli) of the kidneys. IgA is an immunoglobulin that is part of an individual’s healthy immune system. The IgA immunoglobulin normally attaches itself to an infection found in the body, triggering an immune response, and works to eliminate the infection. When an individual has IgA Nephropathy, a defective form of IgA attaches itself to another IgA molecule instead of an infection, causing an immune complex. These then become stuck in the kidneys’ glomeruli, which damages the kidneys’ filters, causing blood and proteins to leak out of the kidneys and into the urine.

Dark, cola-colored urine

Protein in the urine, which can be foamy (called proteinuria)

Low blood protein level shown in a blood test

Swelling in the face, eyes, and lower extremities

Weight gain due to extra fluid building up in your body

Can cause high blood pressure (called hypertension) and high fat levels in the blood (high cholesterol)

Fast Facts


IgAN is the most common form of primary glomerulonephritis that affects about 200,000-350,000 people per year in the world.


It can be diagnosed in both children and adults, but is most commonly diagnosed in young and middle- aged adults.


Scientists have not found the cause of the defective IgA immunoglobulin in patients who suffer from IgAN.


The only way to diagnose IgAN is a kidney biopsy to look at the kidney’s filtering units under a microscope. The buildup of IgA deposits causes inflammation and damages the filtering units of the kidneys.


On average, 20% of patients will progress to end-stage kidney disease.


It is common for IgAN to return after a kidney transplant


Asians and Caucasians are most likely to be diagnosed with IgAN.


IgAN is twice as common in males than females

Treating Your Disease

Short-Term Goals

The short-term goal of treatment is to stop or lower the amount of protein and blood spilling into the urine and reduce symptoms.

Long-Term Goals

The long-term goals of treatment include preventing relapses of protein and blood in the urine and preventing the deterioration of kidney function.

There are currently two FDA-approved treatment options for IgA Nephropathy. Contact your doctor to ask about the best treatment option for you.

How to Live With Your Disease

1

Following a low fat, low sodium diet will help improve your kidneys’ function and your IgAN symptoms.

2

Finding a nephrologist that specializes in IgAN is very important to your long-term health.

3

Learn about your disease, treatment options, and clinical trials in order to better advocate for yourself.

4

NephCure Kidney International can help you connect with other patients and find support to manage your disease.

Nephrotic Syndrome

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Nephrotic Syndrome is a collection of signs and symptoms characterized by dysfunction in the part of the kidney that filters blood (glomeruli). Nephrotic Syndrome can be diagnosed with a urine test.

Common Symptoms:

Protein in the urine, which can be foamy (proteinuria)

Low levels of protein in the blood (hypoalbuminemia)

Swelling in parts of the body, most noticeable around the eyes, hands, feet, and abdomen (edema)

Weight gain due to extra fluid building up in your body

Can cause high blood pressure (hypertension) and high fat levels in the blood (high cholesterol)

Fast Facts


FSGS causes Nephrotic Syndrome in adults more frequently than in children and is most prevalent in adults 45 years or older.


Minimal Change Disease is the most common cause of Nephrotic Syndrome in children, associated with 80% of cases.


In the United States, adult incidence of primary Nephrotic Syndrome each year is 3 out of every 100,000 individuals.


2-4 out of every 100,000 children are diagnosed with primary Nephrotic Syndrome each year in North America.


Some of the diseases that cause Nephrotic Syndrome include Minimal Change Disease, FSGS, and Membranous Nephropathy. These diseases are called “idiopathic” because they occur without a known cause.


Although primary Nephrotic Syndrome is a rare disease, anyone can get it. In fact, it’s one of the most common contributors of Chronic Kidney Disease in children.


Remission means there is currently
no protein spilling into the urine.


Each Nephrotic Syndrome patient follows a unique journey.


Males are more likely to have Nephrotic Syndrome than females.


Nephrotic Syndrome is often misdiagnosed as allergies.


Conditions that occur in other parts of the body can cause secondary Nephrotic Syndrome. These conditions include diabetes, cancer, lupus, amyloidosis, infection, drug use, allergies, and vasculitis.

Treating Your Disease

Short-Term Goals

The short-term goal of treatment is to stop protein spillage completely (remission) or lower the amount of protein lost in the urine as much as possible.

Long-Term Goals

The long-term Goals of treatment include preventing relapses of protein in the urine and preventing the deterioration of kidney function.

There are currently very few FDA-approved treatment options for Nephrotic Syndrome. The standard first-line treatment for Nephrotic Syndrome is Prednisone, a corticosteroid.

How to Live With Your Disease

1

Following a low fat, low sodium diet will help improve your kidneys’ function and your Nephrotic Syndrome symptoms.

2

Finding a nephrologist that specializes in Nephrotic Syndrome is very important to your long-term health.

3

Learn about your disease, treatment options, and clinical trials in order to better advocate for yourself.

4

NephCure Kidney International can help you connect with other patients and find support to manage your disease.

C3 Glomerulopathy (C3G)

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Overview of C3G:

C3G stands for complement 3 glomerulopathy, a very rare and chronic disease that causes the kidneys to not work properly. The C3 refers to a key blood protein that plays an important role in your immune system. The G stands for glomerulopathy or damage to the filtering units of the kidney. Physician experts believe that when complement proteins like C3, which are part of your immune system, are not well controlled, it results in damage to the kidneys’ filtering units (glomeruli).

What is the “Complement System”?

It is a group of proteins that help, or complement, your immune system to fight bacteria and viruses. If the complement system becomes overactive, the C3 complement proteins are broken down and trapped in the kidneys. The trapped C3 causes a series of reactions that damage your glomeruli (filtering units in the kidney).

Symptoms:

High levels of protein in urine (proteinuria)

Blood in urine (hematuria)

Low levels of protein in the blood
(hypoalbuminemia)

Swelling in many areas of the body
(edema)

Dark and/or foamy urine

High blood pressure (Hypertension)

Decreased urine output

Elevated creatinine in the blood

Fast Facts


Children with C3G tend to be more responsive to treatment than adults


Genetic changes or the development of abnormal antibodies in your immune system are the most common causes of C3G


C3G affects 2-3 per 1 million people


Steroids and other immunosuppressive therapies can be effective in C3G


C3G affects people of all ages

Treating Your Disease

Short-Term Goals

The short-term goal of treatment is to stop protein spillage completely (remission) or lower the amount of protein lost in the urine as much as possible.

Long-Term Goals

The long-term Goals of treatment include preventing relapses of protein in the urine and preventing the deterioration of kidney function.

Standard first-line treatments for C3G are blood pressure medications, like lisinopril and ibesartan, and immunosuppressants, like steroids and mycophenolate mofetil (MMF or Cellcept). There are currently two FDA approved treatments for C3G: FABHALTA (iptacopan) (for adults, ages 18 and up) and EMPAVELI (pegcetacoplan) (for adolescents and adults, ages 12 and up).

How to Live With Your Disease

1

Following a low fat, low sodium diet will help improve your kidneys’ function and your C3G symptoms.

2

Finding a nephrologist that specializes in C3G is very important to your long-term health.

3

Learn about your disease, treatment options, and clinical trials in order to better advocate for yourself.

4

NephCure Kidney International can help you connect with other patients and find support to manage your disease.

Membranous Nephropathy (MN)

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Overview and Symptoms:

Membranous Nephropathy (MN) is a rare kidney disease characterized by thickening in the part of the kidney that filters blood: the glomerular basement membrane. The thicker membrane does not work normally and causes protein that belongs in the blood to be spilled into the urine.

Early symptoms of Membranous Nephropathy:

Swelling in parts of the body, most noticeably around the eyes, hands, feet, and abdomen (called edema)

Protein in the urine, which can be foamy (called proteinuria)

Can cause high blood pressure (called hypertension) and high fat levels in the blood (high cholesterol)

Low levels of protein in the blood

Fast Facts


The only way to differentiate membranous nephropathy from other primary nephrotic syndrome conditions is to have a kidney biopsy.


MN occurs more frequently in adults than in children and is most prevalent in adults 40 years or older.


MN is associated with less than 5% of all new cases of nephrotic syndrome in children each year.


Some patients with membranous nephropathy are steroid-resistant.


MN is the most common cause of primary nephrotic syndrome in Caucasian adults.

Treating Your Disease

Short-Term Goals

The short-term goal of treatment is to stop protein from spilling completely (remission) or lower the amount of protein lost in the urine as much as possible.

Long-Term Goals

The long-term goals of treatment include preventing relapses of protein in the urine and preventing the deterioration of kidney function.

There are no currently FDA-approved medication options for MN. The standard first-line treatment for MN is prednisone, a corticosteroid.

How to Live With Your Disease

1

Following a low fat, low sodium diet will help improve your kidneys’ function and your MN symptoms.

2

Finding a nephrologist that specializes in MN is very important to your long-term health.

3

Learn about your disease, treatment options, and clinical trials in order to better advocate for yourself.

4

NephCure can help you connect with other patients and find support to manage your disease.

Minimal Change Disease (MCD)

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Overview and Symptoms:

Minimal Change Disease (MCD) is a disorder affecting the filtering units of the kidney (glomeruli) that can lead to symptoms associated with Nephrotic Syndrome. Some symptoms of NS include:

Proteinuria– Large amounts of protein ‘spilling’ into the urine

Edema – Swelling in parts of the body, most noticeable around the eyes, hands, and feet that become painful

Hypertension – High blood pressure

Hypoproteinemia – Low blood protein

Hypercholesterolemia – High level of cholesterol

Fast Facts


MCD is the most common cause of NS in children associated with 80 to 90% of cases.


It is also seen in adults, but makes up only 10 to 15% of NS cases.


Up to 50% of adult MCD patients that go into
remission will relapse.


Males are twice as likely to have MCD as females.


If MCD does not recur for three years, there is a good chance that it will not return.

Treating Your Disease

Short-Term Goals

The short-term goal of treatment is to stop protein from spilling completely (remission) or lower the amount of protein lost in the urine as much as possible

Long-Term Goals

The long-term goals of treatment include preventing relapses of protein in the urine and preventing the deterioration of kidney function.

There are no currently FDA-approved medication options for MCD. The standard first-line treatment for MCD is Prednisone, a corticosteroid.

How to Live With Your Disease

1

Following a low fat, low sodium diet will help improve your kidneys’ function and your MCD symptoms.

2

Finding a nephrologist that specializes in MCD is very important to your long-term health.

3

Learn about your disease, treatment options, and clinical trials in order to better advocate for yourself.

4

NephCure Kidney International can help you connect with other patients and find support to manage your disease.