Things to Know About Immunoglobulin A Nephropathy

This article is for people who are living with immunoglobulin A nephropathy (IgAN) and their care partners, or anyone who wants to learn more about IgAN. The goal of this activity is to help you talk to and work with your doctor and healthcare team.

You will learn about:

• What IgAN is and factors that may increase your risk

• How IgAN may progress

• Symptoms and complications (additional problems) that may happen

• Tips to help your quality of life while living with IgAN

• Questions to ask your doctor and healthcare team

Immunoglobulin A nephropathy -- also called IgAN or Berger disease -- is an autoimmune condition where immunoglobulin A (IgA) builds up in your kidneys.

IgA is a type of antibody normally made by your immune system, your body's natural defense system. But with IgAN, there's a problem with your immune system and clumps of IgA form and get stuck in your kidneys. This causes inflammation (swelling) and damages the small filters in your kidneys -- your glomeruli -- causing blood and protein to leak into your urine.

Over time, damage can cause scarring and make it harder for your kidneys to do their job and filter your blood properly. IgAN may even lead to kidney failure in some people.

IgAN can happen at any age, but it usually develops between adolescence/early teens and age 40. The exact cause of IgAN is not known, but it's thought that your genes (information inside your cells that determines your traits) and triggers in your environment both play a role.

Factors that may increase your risk of IgAN or people that it tends to be more common in are those who:

• Are male

• Are Asian or white

• Have a family member who is living with IgAN, another immune condition, certain health conditions (such as HIV or certain liver and digestive conditions), or have certain infections

IgAN symptoms can be different for different people. Some people may even have very few or no symptoms, especially early on. Because of this, it may be years before IgAN is found or diagnosed.

When symptoms do happen, they can include:

• Pink, dark, or tea-colored urine due to hematuria (blood in your urine)

• Foamy urine due to proteinuria (large amounts of protein in your urine)

• Back pain on one or both sides below your ribs

• Edema (swelling from extra fluid) in your hands, legs, ankles, or feet

• Weakness, fatigue (tiredness)

IgAN is a chronic (long-term) condition that can progress or get worse over time. Complications that may happen can include:

• High blood pressure. Kidney damage from IgAN can increase your blood pressure, which can then further damage your kidneys

• Chronic kidney disease (CKD), where your kidneys slowly stop working over time and can lead to heart disease or stroke

• Nephrotic syndrome, a group of symptoms that can include edema, proteinuria, low levels of protein in your blood, and high cholesterol

• Kidney failure, where your kidneys can't filter your blood well enough

How IgAN may progress can vary from person to person. Some people may have few or no complications for years. But for others, IgAN may progress to kidney failure and end-stage kidney disease (ESKD), also known as end-stage renal disease (ESRD). With ESKD, your kidneys no longer work well enough on their own or stop working altogether and you'll need dialysis or a kidney transplant.

Being diagnosed with IgAN as early as possible is important for getting proper care and treatment. How IgAN may progress can depend on many factors. So your doctor and healthcare team will check your health regularly and can recommend ways to help manage IgAN and its symptoms and slow how quickly it may progress.

Living with IgAN can impact your overall quality of life. In addition to affecting your physical health, it can also affect your mental well-being. It's not uncommon to feel overwhelmed, or even scared, by a new diagnosis or when living with a chronic condition. Many people can have concerns or questions about how living with IgAN may affect their work, school, relationships, and day-to-day life.

But you're not alone, and having open and honest communication with your doctor and healthcare team can help. They are there for you and can help you find other support as well.

Tips to help your quality of life while living with IgAN can include:

• Working with a healthcare team member who understands your individual needs

• Sticking to your treatment plan and keeping your medical appointments

• Staying physically active and eating a healthy diet

• Getting 7-8 hours of sleep a night

• Talking to a social worker, therapist, counselor, or other mental well-being team member

• Finding ways to help cope with stress

• Joining a support or community group

• Staying socially connected

Questions you can ask about IgAN can include:

• How can IgAN affect my kidneys and my overall health?

• How may IgAN progress and how can we manage any symptoms and complications that may happen?

• Are there any lifestyle changes I should make?

• How can I make sure I have the best quality of life possible?

• What should I do if I feel stressed or depressed?

• Is there a support group I can join?

• Where can I find more information and resources?

Congratulations!

You have successfully completed the program Things to Know About Immunoglobulin A Nephropathy.

View Additional Materials on this topic that you may find useful:

IgA Nephropathy

IgA Nephropathy -- National Library of Medicine

CKD Basics

Take Care of Your Kidneys and They Will Take Care of You