Life with IgA Nephropathy: What to expect after diagnosis

Life with IgA Nephropathy: What to expect after diagnosis
the PicnicHealth Team
December 1, 2023
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Receiving an IgA nephropathy (IgAN) diagnosis, also known as Berger’s disease, can make many people feel worried about the impact IgA nephropathy will have on their day-to-day life as well as their future. These uncertainties can be overwhelming, but reviewing research and statistics can help you stay grounded. By focusing on what’s in your control, like lifestyle changes and treatment options, you can live life to the fullest.

To help you navigate life with IgA nephropathy, we’ve broken down the most helpful information about life expectancy and the best ways to manage this condition.

IgA nephropathy kidney disease causes

Managing IgA nephropathy starts with understanding the diagnosis. IgA nephropathy is a kidney disease characterized by accumulating the immunoglobulin A (IgA) protein in the glomeruli — the kidneys' filtering units. This buildup can lead to inflammation, which can have an impact on the kidneys' ability to filter waste from the blood over time. 

The main cause of IgA nephropathy remains largely a mystery; some researchers believe a dysregulation of the immune system can cause it. We do know that having a family history of IgA nephropathy can increase your risk, so there may be a genetic link.

Recognizing IgA Nephropathy symptoms 

Early stages of IgA nephropathy often do not cause any symptoms. Some symptoms to look out for include swollen hands and feet, protein in the urine, or blood in the urine in later stages of the condition. IgA deposits that impact kidney function cause these symptoms.

Is IgA Nephropathy Life-Threatening?

While IgA nephropathy can have a serious impact on your kidneys, it’s not always life-threatening. The progression of the disease can vary from person to person, depending on their overall health and how well they manage the condition. Some people may experience a gradual loss of kidney function over decades, while others may be able to avoid significant progression and maintain stable kidney function. 

IgA Nephropathy family history 

Genetics can play a role in how likely someone is to develop IgA nephropathy and how well they can manage the condition. If you know you have a family history of IgA nephropathy, you can take a proactive approach by keeping your care team in the loop so they can monitor your kidney function and make smart lifestyle choices like keeping your blood pressure and weight low. 

IgA kidney disease treatment

If you’ve been diagnosed with IgA nephropathy, your care team will most likely focus on maintaining your kidney health. This often involves controlling the symptoms by prescribing medications to lower blood pressure, cholesterol, and inflammation. Your care team may also recommend specific changes to your diet, like lowering your sodium intake and loading up on healthy greens. The goal is to slow the progression of the disease. In more advanced stages, you may need to undergo dialysis or get a kidney transplant. 

IgA Nephropathy life expectancy 

The National Center for Biotechnology Information (NCBI) has extensive data on IgA nephropathy. Statistically, many people living with IgA nephropathy can have a normal life expectancy, especially if they detect IgA nephropathy at an early stage and maintain their kidney health with a combination of treatment and lifestyle changes. Some IgA nephropathy patients may experience more rapid disease progression, which can lead to chronic kidney disease or renal failure, which may shorten their life expectancy. 

The best way to live a full, high-quality life with IgA nephropathy is to be proactive and take good care of yourself. This looks like regular urine tests, making sure your overall health, like your blood pressure and cholesterol, is in good shape and getting good, regular exercise. 

One of the best ways to move IgA nephropathy treatment forward is to participate in research studies. PicnicHealth makes it easy to safely share your health information and join studies with researchers working on the next big treatment breakthrough. Learn more about how you can take control of your health while helping patient-powered research thrive.


the PicnicHealth Team

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Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.


Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.


Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.


Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.

Having trouble managing your loved one's medical records?

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LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

Learn more about contributing to IgAN research with PicnicHealth. 

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Keep an Eye on These Test Results

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Resource Flyer

Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.

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