This is a problem that the team at PicnicHealth is working hard to solve. Founded by Noga Leviner in 2014, PicnicHealth was created by a fellow patient to empower others to take complete ownership of their health records and manage their conditions confidently. In this guide, we will explore the symptoms of IgAN, also known as Berger’s Disease, and provide helpful tips for managing the condition.
Hematuria is the most common symptom of IgAN and can range from mild to severe.
If you’ve recently been diagnosed with IgAN or suspect you may have it, you may be wondering about the symptoms and how to manage them. IgAN, also known as Berger’s Disease, is a chronic kidney disease that affects millions worldwide. It occurs when an excess amount of a protein called immunoglobulin A (IgA) builds up in the kidneys, causing inflammation and damage to the kidney tissue over time.
While some people with IgAN may have no symptoms at all, others may experience one or more of the following:
Hematuria: This is the most common symptom of IgAN, where blood appears in the urine, giving it a pink, red or brown color. It can range from mild to severe and may occur periodically and may not be outwardly visible.
Proteinuria: This is a condition where excess protein is found in the urine, indicating that the kidneys are not functioning correctly. In IgAN, proteinuria is a sign of kidney damage and can lead to complications such as edema, high blood pressure, and kidney failure.
Hypertension: High blood pressure is a common symptom of IgAN and can lead to complications such as heart disease, stroke, and kidney damage. Hypertension can be caused by IgAN itself, as well as by the medications used to treat it.
Edema: Edema is a condition with swelling in the legs, ankles, and feet. It occurs when the body retains excess fluid, leading to discomfort, pain, and difficulty moving.
Fatigue: Fatigue is a common symptom of IgAN and can be caused by anemia or by the disease itself. It can lead to a lack of energy, difficulty concentrating, and reduced quality of life.
Other possible symptoms of IgAN include abdominal pain, joint pain, IgA nephropathy rash (appears as small red or purple spots on the skin), and fever. However, these symptoms are less common and may not directly relate to the disease.
If you experience any of these symptoms, speak to your healthcare provider. Early IgAN diagnosis and treatment can help manage the symptoms and prevent further kidney damage.
It’s important to note that children can also develop IgAN. The symptoms in children may be similar to those in adults, including hematuria, proteinuria, and high blood pressure. However, children may also experience other symptoms, such as fatigue, abdominal pain, and joint pain. The pediatric IgA nephropathy prognosis can vary depending on several factors, including the age of onset, the extent of kidney damage, and the response to treatment. With pediatric IgAN treatment, many children with IgA Nephropathy can lead a normal, healthy life.
IgAN Stages, Life Expectancy, and Prognosis
The IgA Nephropathy stages are determined based on the amount of kidney damage.
IgAN is a chronic kidney disease that can progress slowly over time, leading to kidney damage and eventually kidney failure. Understanding the stages of IgAN and how they impact life expectancy and prognosis is important for managing the condition effectively. The stages of IgAN are determined based on the amount of kidney damage. There are four stages of IgAN:
Stage 1: Mild kidney damage, with no symptoms or mild proteinuria.
Stage 2: Mild to moderate kidney damage, with slightly elevated creatinine levels and proteinuria.
Stage 3: Moderate to severe kidney damage, high creatinine levels, proteinuria, and hypertension.
Stage 4: Severe kidney damage, with very high creatinine levels and proteinuria. Dialysis or an IgA nephropathy kidney transplant may be necessary at this stage.
The life expectancy of a person with IgAN depends on several factors, including the stage of the disease, age, gender, and other health conditions. With proper management and treatment, many people with IgAN can live long and healthy lives.
The prognosis for IgAN is highly variable and depends on several factors, including the disease's stage, the progression rate, and the treatment response. IgAN can go into remission or slow down in some cases, while it can progress rapidly in others.
IgAN Diagnosis and Treatment
Urine tests and kidney biopsy are often used to diagnose IgAN and determine the extent of kidney damage.
If you are experiencing IgA nephropathy symptoms, it’s important to talk to your healthcare provider right away. Early diagnosis and treatment can help manage the condition and prevent further kidney damage. Your healthcare provider may recommend various tests to diagnose the condition, including:
Urine tests: Urine tests can detect the presence of blood and protein in the urine, which are common signs of IgAN. Your healthcare provider may recommend a 24-hour urine collection to measure the amount of protein in your urine..
Blood tests: Blood tests can measure kidney function and detect the presence of antibodies involved in developing IgAN. Your healthcare provider may also recommend blood tests to check for other underlying conditions that can cause kidney damage.
Kidney biopsy: A kidney biopsy is a procedure where a small sample of kidney tissue is taken and examined under a microscope. This is the most accurate way to diagnose IgAN and determine the extent of kidney damage. Your healthcare provider may recommend a kidney biopsy if they suspect you have IgAN.
Once you have been diagnosed with IgAN, your healthcare provider will work with you to develop a treatment plan. The goal of treatment is to manage the symptoms of IgA nephropathy, slow the progression of the disease, and prevent kidney failure. Treatment options may include:
Medications: Medications such as corticosteroids, immunosuppressants, and angiotensin-converting enzyme (ACE) inhibitors may be used to reduce inflammation, control blood pressure, and prevent further kidney damage. Your healthcare provider may prescribe a combination of medications based on your individual needs.
Lifestyle changes: Lifestyle changes can help manage IgAN symptoms and reduce the risk of complications. Maintaining a healthy weight, eating a healthy IgA nephropathy diet, and exercising regularly can all be helpful. Your healthcare provider may also recommend limiting sodium and protein intake.
Dialysis or kidney transplant: In severe cases of IgAN, dialysis or a kidney transplant may be necessary to replace the function of the damaged kidneys. Your healthcare provider can provide guidance on these options and help you make the best decision for your individual needs.
It’s important to remember that everyone’s experience with IgAN is different, and there is no one-size-fits-all approach to treatment. Your healthcare provider can work with you to develop a personalized treatment plan that meets your individual needs. Additionally, recent research has led to the development new treatments for IgAN, providing hope for those living with the condition. Your healthcare provider can provide you with the latest information on these treatments and help you determine if they may be right for you.
Living with IgAN
Managing your diet, exercising regularly, and managing stress can help manage IgAN symptoms and improve your quality of life.
Living with IgA nephropathy can be challenging, but with the right knowledge and resources, it’s possible to manage the condition effectively and improve your quality of life. Here are some tips for living with IgAN:
Learn as much as you can: Understanding your condition is crucial to managing it effectively. Take the time to learn about IgAN, its symptoms, and the available treatment options. Talk to your healthcare provider and ask questions to help you make informed decisions about your care.
Manage your diet: Eating a healthy diet that is low in salt and protein can help manage IgAN symptoms and reduce the risk of complications. Your healthcare provider may recommend working with a registered dietitian to develop a meal plan that is right for you. IgA nephropathy foods to avoid include those with high salt content,highly processed foods, and foods high in potassium and phosphorus.
Stay hydrated: Drinking enough fluids can help keep your kidneys functioning properly. However, talk to your healthcare provider to determine how much fluid you should be drinking each day.
Exercise regularly: Regular exercise can help manage IgAN symptoms and improve overall health. Speak to your healthcare provider about what exercise is safe for you. Aim for at least 30 minutes of moderate exercise most days of the week (you can talk but not sing the words to your favorite song).
Manage stress: Stress can worsen IgAN symptoms and lead to complications. Practice stress management techniques such as meditation, deep breathing, or yoga to help reduce stress levels. Consider seeing a mental health professional or therapist if stress is impacting your quality of life.
Follow your treatment plan: It is essential to follow your treatment plan as prescribed by your healthcare provider. This may include taking medication, making lifestyle changes, and attending regular check-ups to monitor your kidney function. Be sure to ask questions if you have concerns or experience any side effects.
Connect with others: Joining a support group for people with IgAN can be a helpful way to connect with others who are going through similar experiences. This can provide emotional support and valuable information about managing the condition. You may also find it helpful to connect with other patients online through social media groups or forums.
These steps can effectively manage IgAN symptoms and improve your overall health and quality of life. It is essential to work closely with your healthcare provider and follow their recommendations to manage the condition successfully. With the right knowledge and support, it’s possible to live a full and active life with IgAN.
Managing IgA Nephropathy with Confidence
Living with IgAN can be challenging, but it doesn't have to be overwhelming. Taking the right steps can effectively manage IgAN symptoms and improve your quality of life. From managing your diet to exercising regularly and managing stress, these small changes can make a big difference in how you feel daily.
It's also essential to work closely with your healthcare provider to monitor your kidney function and adjust your treatment plan as necessary. Early detection and treatment of IgAN can help prevent further kidney damage and improve long-term health outcomes.
At PicnicHealth, we understand the challenges of living with a chronic condition like IgAN. That's why we're committed to empowering patients to take complete ownership of their health records and confidently manage their conditions. You can work with your healthcare provider to develop a personalized treatment plan that meets your unique needs by providing easy access to your medical records.
We hope this article has provided helpful information about IgAN symptoms and management. Remember, you're not alone in this journey. Support groups and resources are available to help you manage your condition and live a fulfilling life. If you’re interested in supporting the future of research, there are many options available from clinical trial matchers, like Antidote, to observational trial sites, like PicnicHealth. You've got this!
To learn more about PicnicHealth’s research opportunities here and connect with a support group in your area here.
Mayo Clinic Staff. (2019, June 15). IgA nephropathy. Mayo Clinic. View Reference
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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
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.
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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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.