For Patients
On this page you can find information about various aspects of managing your kidney disease in general and during the different stages you might go through. We understand that living with a rare kidney disease can feel overwhelming. Here, you will find valuable information and support to help you on your personal journey.
Understanding your disease
Receiving a diagnosis of a rare kidney disease can be a tough experience. It's natural to feel a mix of emotions as you come to terms with your condition. Therefore it is important to get information about your disease. Knowledge is the key to secure health and well being.
Proactive care
Taking proactive steps to manage your rare kidney disease can make a significant difference. Here are some essential tips to help you taking care of your health:
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Stay informed: Keep yourself updated on the latest research and treatments for your condition. Knowledge empowers you to make informed decisions about your health.
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Regular check-ups: Schedule regular appointments with your nephrologist to monitor your kidney function and catch any potential issues early.
Mental health matters
Living with a rare kidney disease does not just affect your body; it can also have a significant impact on your mental health. Also here, it is important to seek help and support as early as possible. Talking to professionals who understand the psychology in chronic diseases can help you and your family to cope with the emotional challenges related to your disease. Taking care of your mental health is just as important as managing your physical health.
Connect with others
Many patients feel lonely when living with a rare kidney disease. You might feel that very few people understand what you are going through. We recommend that you reach out to patient support groups and organizations. Connecting with others who share your specific challenges can provide comfort and encouragement. With advice and support from others, you will likely find it easier to navigate through the various challenges may face during your journey.
Recommendations:
C3G Warriors:
https://www.facebook.com/groups/1596621077273534
C3G familierne - C3G og DDD familier i Danmark: https://www.facebook.com/groups/1371614969519452
DDD/C3G Renal Support Group UK:
https://www.facebook.com/DDDC3GUK
aHUS & MPGN Selbsthilfe:
https://www.facebook.com/groups/atypischesHUS
MPGN & DDD Kidney Support Group:
https://www.facebook.com/mpgndddsupportgroup
ERKNet:
The University of Iowa - Kidneeds:
https://kidneeds.lab.uiowa.edu
Nephrologists’ advice
We have gathered a number of expert nephrologists to give their perspective to patients living with C3G and IC-MPGN. You can see all of the nephrologists’ advice in the films below.
1 What is the advice from experts to newly diagnosed patients?
Different nephrologists share their perspectives on what to do when you have just received a diagnosis.
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Get information about your disease
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Consult an expert center
For more information see “Study & Registry"
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Reach out to patient organizations
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Enroll in a registry
2 What are the key concerns for newly diagnosed patients?
Marina Vivarelli elaborates on what you should be aware of when you receive your diagnosis.
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Get accurate information
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Be careful about online information
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Listen to the expert nephrologists
For more information see “Study & Registry"
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Bring down the proteinuria level
3 What does good follow-up look like during chronic care?
Marina Vivarelli explains how to manage your disease and the importance of checking your proteinuria levels regularly.
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Get a thorough yearly examination to check all of the systemic features of the disease
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Check proteinuria monthly to secure early recognition of a relapse
4 What are the specific issues to be aware of concerning dialysis and transplantation?
Marina Vivarelli tells how you should handle dialysis and transplantation.
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Consider your specific form of your disease when selecting a donor
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Get treated at a center that can manage potential relapse after transplantation
5 What is the advice in terms of diet?
Marina Vivarelli gives her advice on what you need to be cautious about regarding your diet.
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Keep a low sodium diet
6 How can patients optimally manage the transition from pediatric to adult care?
Søren Rittig explains how he deals with this important transition.
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Solo consultation with kids from young age
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Prepare the kids to take responsibility of
their disease
Patient stories
C3G and IC-MPGN may be rare and heterogeneous, but at the same time there are many common denominators in the lived experiences. To support and inspire patients and families living with C3G and IC-MPGN we have collected some powerful stories.
A mother tells her story of how it is to have a child with a rare kidney disease
This story highlights the lack of awareness, knowledge and the general unmet medical needs in rare complement mediated kidney diseases. Most importantly, Esther’s story confirms that miracles can and do happen.
Living with a rare kidney disease.
A patient's story
Adrian lives with IC-MPGN – the rare kidney disease that changed his life completely. His story is a powerful reminder to never give up hope in the fight against a poor prognosis.
Living with a rare kidney disease.
A patient’s story
It came as a shock when Hyo Jin was diagnosed with C3G, but despite poor prognosis and a painful turn in life, she kept fighting to find her way back to a normal life.
Living with a rare kidney disease:
A caregiver's story
When Oksana’s son was diagnosed with C3G, it felt like the end of the world. But she kept fighting. Despite a poor prognosis, she refused to give up, she consulted experts, and she searched determinedly for the right level of care. The journey gave Oksana a new perspective on life and a mission.
Mental Wellbeing
Antonia King
Hyo Jin Heinz
Dirk Bethe
Living with a rare kidney disease affects more than just the kidneys, lab results, and treatment plans. It also affects your thoughts, emotions, relationships, and sense of identity. If you have ever felt overwhelmed, isolated, or emotionally exhausted, it does not mean that you are weak. You are human and are responding to a very real and ongoing challenge.
Rare diseases often come with uncertainty. There are fewer answers and fewer people who truly understand. Sometimes there are long periods of waiting or explaining the condition over and over again. This uncertainty can fuel anxiety, sadness, or a constant feeling of being „on alert.” Taking care of your mental wellbeing is essential to managing your health.
It is important to acknowledge that it is okay not to be okay all the time. A diagnosis can evoke grief for the life you expected, fear about the future, and frustration with limitations you did not choose. Having these feelings does not mean that you are failing to be positive or strong; it means that you are processing something difficult.
For many people, professional support is a vital part of that process. Speaking with a psychologist, counselor, or social worker who understands chronic illness can help you adjust to your diagnosis, manage anxiety or depression, and develop coping strategies that fit your life.
Getting professional help is not a last resort; it is proactive care, just like seeing a nephrologist for kidney issues.
Setting boundaries is another crucial aspect of maintaining mental wellbeing. Managing a rare kidney disease can require a lot of physical and emotional energy, so it is important to recognize your limits and protect your time and space. Saying no to extra commitments and designating rest periods are not selfish—they are acts of self-preservation. Clear boundaries prevent burnout, reduce stress, and allow you to focus on activities that support your health and healing.
Your emotional and physical health are closely connected. Ongoing stress and emotional strain can affect sleep, energy levels, motivation, and even the effectiveness of treatments. Addressing mental wellbeing can improve quality of life and make day-to-day disease management feel more manageable.
A rare kidney disease affects not only you, but also the people who care about you. Family members and partners may feel scared, upset, helpless, or unsure of how to support you. Roles may change. Plans may change. Communication can become strained, especially when everyone is trying to „stay strong” for each other.
Open and honest conversations, when you are able to have them, can help protect relationships. Letting your loved ones know what you need—whether it is practical help, emotional space, or simply being listened to—can ease tension and reduce misunderstandings. It is also okay to recognize that your family members may need support of their own.
Connection matters. Having a space where you do not have to explain or minimize your experience, whether with a mental health professional, a peer support group, another patient, or a trusted friend, can be deeply grounding.
Living with a rare kidney disease requires resilience, but being resilient does not mean facing everything alone. Taking care of your mental wellbeing and accepting help along the way, is part of caring for your kidneys, your relationships, and yourself.
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Linkedin post, Novartis - C3G is a progressive and ultra rare kidney activity
Antonia King
Hyo Jin Heinz
Diet and Nutrition
Enrique Gordillo and
Dr. Louise Havkrog Salomo
A balanced diet is vital for everyone’s health and wellbeing. For people living with kidney disease, a renal diet can help to reduce proteinuria and metabolic acidosis, manage blood pressure, and improve metabolic health. Therefore, a renal diet can ease the strain on kidneys affected by C3G and IC-MPGN. Furthermore, it can help to prevent cardiovascular, renal and metabolic complications, even in individuals without existing kidney disease. The kidneys play a vital role in processing nutrients, balancing fluids, maintaining the body’s acid–base balance, and filtering metabolic waste products, such as urea and creatinine from everything we consume. One of the most important dietary recommendations for people with kidney disease is to reduce salt intake, limit sugar and consumption of saturated fat, and restrict food additive (E-number) intake. It is also advisable to avoid highly processed foods, as these often contain high levels of salt, sugar, unhealthy fats, and additives. These include energy drinks, sausages, chips, sweets, ice cream, and mass-produced bread. To avoid processed foods, patients are encouraged to prepare their own meals using fresh ingredients and natural spices. When preparing these meals, they should focus on eating more vegetables and less meat, particularly processed meat. Plant-based protein is generally associated with a lower dietary acid load and reduced uremic toxin generation, potentially through favorable modulation of the gut microbiota. The lower a patient’s kidney function, the more restricted their diet usually needs to be. Nevertheless, it remains important to eat a varied and nutritious diet. To minimize frustration, adopting an 80/20 approach can be helpful. This involves following a kidney-friendly diet 80 percent of the time and allowing for more flexibility for the remaining 20
percent. Meal planning can be a challenge for people trying to follow a kidney friendly diet. Without planning, one may find himself reaching for processed snacks throughout the day. Preparing homemade snacks and planning meals in advance can help you stay on track. As some kidney-friendly recommenda- tions can result in repetitive and uninspiring food, the pleasure associated with eating can be negatively impacted. Cookbooks and recipes developed in collaboration with nephrologists, nutritionists, and skilled chefs can make adopting a renal diet a positive culinary experience for those affected and their families.
It is recommended that you maintain an ongoing dialogue with your treating nephrologist regarding diet and nutrition, as well as undergoing regular blood and urine tests as part of your overall care.
Enrique Gordillo
Dr. Louise Havkrog Salomo
Research, regionh: Louise Salomo
Researchgate Profile: Louise Salomo
The Role of and Impact on Caregivers
Antonia King,
Marianne Silkjaer Nielsen and
Tülin Sahin
Caring for a loved one with a chronic illness can be deeply connecting, but it also carries emotional weight. Whether you are caring for a parent, partner, child, or another loved one, it takes extraordinary strength when you need to be alert and responsible day after day, all the time. There are no words to capture the pain of watching a loved one suffer. It is hard to see them struggle while longing for the things that once felt ordinary, such as independence, work, school, play, and the simple freedom to live without constant worries and limitations. You can offer your help, but your loved one may not always accept it. You may see the person you care for change, physically, emotionally, or mentally due to illness. The roles within your relationship may shift. These changes can evoke feelings of grief alongside love and commitment. You may feel lonely sometimes, and at the same time, you may also experience a deeper connection with your loved one as you navigate through this journey together. Maybe you will also gain new opportunities to learn and to adopt deeper perspectives on what is important in life. Adjusting to a new and radically different reality can leave people vulnerable in many ways. Emotional exhaustion, uncertainty, and grief can impair judgement, making one more susceptible to manipulation, gaslighting, exploitation, and abuse. Maintaining structure and healthy boundaries can provide stability. To create a more normal and supportive life for our loved ones, we must nurture that possibility for ourselves as well. The person receiving care often becomes the center of a caregiver’s world. Other family members may sometimes feel overlooked, and caregivers themselves may easily place their own needs last. Over time, caregiving becomes far more difficult when your own wellbeing and that of the wider family are neglected. Prioritizing yourself can also foster a culture where caregiving becomes more of a shared responsibility. Please know that your feelings are valid, and you also do not have to be alone as a caregiver. Asking for help and connecting with others, who share similar experiences, can be a lifeline that provides you and your loved one understanding, strength, coping strategies, and unexpected joy and gratitude. For patients, having a trusted and loving caregiver by their side makes all the difference.
Antonia King
Tülin Sahin
Building a Functional Life
Antonia King
Hyo Jin Heinz
Living with C3G or IC-MPGN can feel overwhelming, especially because it is rare, unpredictable, and often misunderstood. Many patients are diagnosed suddenly, during a health crisis, or after years of unexplained symptoms. Along with the physical impact, C3G affects work, relationships, mental health, and how patients see their futures.
There is no single “right” way to live with C3G or IC-MPGN—but there are ways to build a meaningful, functional life that respects your limits while protecting your independence and sense of purpose.
C3G and IC-MPGN force patients to rethink what “normal life” means. Fatigue, brain fog, swelling, infections, hospital visits, medications, and uncertainty can all interrupt daily routines. Functional living does not mean pushing through at all costs—it means learning how to live with the disease, not constantly against it.
Some days, functionality means working, exercising, and socializing. Other days, it means resting, managing symptoms, or simply getting through the day safely. Both are valid. Living well with C3G or IC-MPGN often requires pacing, flexibility, and letting go of guilt when our bodies say “not today.”
Employment: Challenges and Possibilities
Work is one of the biggest concerns for many people with rare kidney diseases. Employment provides income, structure, social connection, and identity—but it can also be a source of stress.
Common challenges include:
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Chronic fatigue and reduced stamina
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Frequent medical appointments
or hospitalizations -
Medication side effects (such as brain fog or infection risk)
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Fluctuating kidney function
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Pressure to “perform” consistently
Despite this, many people with C3G do work—full time, part time, freelance, or in modified roles. The key is finding work that fits your health, not forcing your health to fit the job.
Helpful strategies may include:
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Flexible or remote work
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Reduced hours or job sharing
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Roles with predictable schedules
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Employers willing to provide accommodations
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Career changes that prioritize your health
If you are able and comfortable, learning about disability rights and workplace accommodations in your country can be empowering. Asking for adjustments is not a failure; it is a survival skill.
When Work Is Not Possible
For some people, working is not realistic for periods of time—or at all. This can be emotionally difficult, especially in societies that tie self-worth to productivity.
If this is your situation, it does not mean your life has less value. Managing a chronic, rare disease is work in itself. Navigating healthcare systems, managing medications, and protecting your health takes time, energy, and resilience.
Accessing disability benefits, financial support, or social services can be complicated and frustrating, but these systems exist because people deserve stability when health limits employment. Asking for help is not giving up—it is choosing sustainability.
The Importance of Support Systems
No one should live with a rare kidney disease alone. Support systems—formal and informal—make a huge difference.
These may include:
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Family and friends who understand your limitations
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Patient organizations and online communities
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Social workers or patient advocates
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Mental health professionals familiar with chronic illnesses
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Employers or educators who are flexible and informed
Connecting with other patients can be especially powerful. Sharing experiences with people who get it reduces isolation and provides practical knowledge that textbooks cannot offer.
C3G and IC-MPGN are unpredictable. Plans may change. Treatments evolve. Life paths shift. But a meaningful life is still possible—one shaped by adaptability, personal awareness, and support.
Antonia King
Hyo Jin Heinz
Family Planning
Lindsey Fuller and
Jack Wetzels
It is important to consult with specialists with experience in C3G and IC-MPGN before becoming pregnant.
Family planning is an important and deeply personal consideration that raises special concerns for many people living with C3G or IC-MPGN. It is natural to have questions. Is pregnancy possible? Could pregnancy trigger a flare? Could a genetic abnormality be passed on to the baby?
Although these diseases are rarely passed from generation to generation, it can happen. In such rare cases, understanding inheritance patterns and speaking with a genetic counselor can provide clarity and help guide decisions. Advances in reproductive medicine also offer options to reduce risks and support informed decision-making.
You must be aware that pregnancy may increase the risk of flares, and some treatments are not safe during this time. Getting pregnant the first one to two years after diagnosis is not recommended.
It is essential to plan ahead with your nephrologist and to maintain a strong collaboration with all relevant healthcare professionals to monitor your health and the development of your baby closely throughout pregnancy. Although there are challenges, many people with C3G or IC-MPGN go on to have successful pregnancies and healthy children.
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Medications may not only impact female patients. Some medications can impact both males and females, causing negative effects on fertility, libido, and fetal health, including birth defects. It is important to discuss medications with your nephrologist to determine risk.
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Many patients and their partners may experience anxiety about making the commitment to have children under these circumstances. Uncertainties about future health, the ability to provide care, job stability, and finances can make this a difficult decision. The challenges are not only physical.
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Pregnancy after transplant is possible and may be more successful if kidney damage is less advanced.
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While difficult to consider, patients should be realistic about the risks of miscarriages, preeclampsia, and premature birth.
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Pregnancy may have complications, such as hypertension, declining eGFR, and permanent changes in kidney function, even if ultimately successful.
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Patients with hereditary genetic diseases who want to have healthy children should seek care from specialists in genetics and reproduction.
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Although your pregnancy may be normal and uneventful, even if you live with C3G or IC-MPGN, the risks may be higher. This means that you should consider the feasibility of things like required bed rest and extra medical appointments as part of your care.
Lindsey Fuller
Advocating for Yourself and Others
Antonia King
Hyo Jin Heinz
Staying informed about C3G and IC-MPGN is an act of self-care. It is essential for feeling empowered to advocate for yourself, your child, and others affected by these diseases.
Receiving a diagnosis can make you feel like you are losing control. Appointments, tests, unfamiliar terminology, and having other people make decisions that may significantly impact your life can be frustrating and intimidating. One of the most powerful ways to regain control is to educate yourself about your condition.
Being informed does not mean becoming a doctor or reading scientific papers every night. Rather, it means understanding the basics: where the condition comes from, how it may progress, which symptoms matter, and how the disease can be managed. This knowledge provides you with a language, and language provides you with a voice.
When you know what is happening in your body, it becomes easier to notice when something feels off, ask the right questions, and impact decisions related to your health. You will also find it easier to weigh risks and benefits with your care team instead of feeling like decisions are happening to you rather than with you. That is advocating for yourself, and it matters.
Patients who are engaged and informed often have better outcomes. They are more likely to follow treatment plans that they understand, catch side effects early, and feel confident speaking up. Confidence does not come from knowing everything; it comes from knowing enough to say, „I do not understand this yet,” or „This is not working for me.”
There is also an emotional side to being informed. Fear often thrives in the unknown. Learning about your condition can replace some of that fear with clarity and realism. It can help you distinguish myths from facts and worst-case scenarios from actual probabilities. While knowledge does not erase uncertainty, it makes it more manageable.
Most importantly, remember this: you are the expert on your own experience. Doctors bring medical training, and you bring your lived reality. When these two forms of expertise converge, care improves.
Start small. Use reputable sources. Write down your questions. Bring a trusted person to appointments if you can. Give yourself grace—learning takes time.
Being informed is not about being „difficult” or demanding. It is about honoring your body, your time, and your right to be an active participant in your care. This is not only empowerment but also compassion toward yourself.
Antonia King
Hyo Jin Heinz
Community and Self-Help
Lindsey Fuller and
Jack Wetzels
Living with C3G or IC-MPGN is often associated with frustrations and significant life changes. This can lead to feelings of isolation, loneliness, and grief.
The conditions may change everyday life into a new reality with unpredictable health challenges, time-consuming medical appointments, and changing treatments. This can result in absence from school, work, or social activities. Uncertainty about the future and how to handle health challenges that could be associated with the diseases, add additional layers of concerns and stress to people living with the diseases.
The diseases can also affect close relatives, partners, and friends. They may find it hard to see someone they love struggling with a serious condition they have never heard about. It can be difficult for others to understand what people impacted by C3G and IC-MPGN are really going through. Thus, misunderstandings, sub-optimal behaviors, disappointments, and conflicts can have a negative impact on relationships and the opportunities to get and give the support needed to optimally manage life with the diseases.
It can be extremely valuable to connect with others who are faced with the same conditions, questions, and challenges. Not only does it feel good to finally be understood; connecting with other patients and caregivers can also help you to take proactive steps to prevent or prepare for potential complications.
If you or someone you care for lives with C3G or IC-MPGN, you can join groups on social media or in-person patient and family meetings. You can find links to meetings and social media groups on CompCure’s website.
Ahus Selbsthilfe, DER_NIERENPATIENT 520: C3-Glomerulopathie Pdf
Oksana Paulsen
Lindsey Fuller
Research and Clinical Trials
Marianne Silkjaer Nielsen,
Hyo Jin Heinz and
Dr. Giulia Bassanese
Clinical trials are studies that test new treatments or new ways of using existing medications. In rare kidney diseases like C3G and IC-MPGN, clinical trials play a very important role because treatment options are still limited. Progress in developing new treatments depends on the participation of patients who choose to take part in clinical research. Because these diseases are so rare, the number of eligible participants is often small. For this reason, studies are conducted across multiple hospitals and across different countries, so that enough patients can participate and meaningful results can be obtained.
Patients consider clinical trials for several reasons, one of which is the possibility of accessing promising therapies before they become widely available. Another reason is the level of medical attention involved. Participants are usually monitored closely by experts, with regular laboratory tests and frequent contact with specialists experienced in these rare conditions. Some patients find reassurance in this careful monitoring. Others are motivated by the chance to advance knowledge for future patients with the same diagnosis. In rare diseases, each participant’s contribution is especially valuable, because every piece of information helps researchers better understand the condition and develop more effective treatments.
However, participation is not the right choice for everyone. A clinical trial is research, so outcomes are not guaranteed. The treatment may or may not be effective, and unexpected side effects are possible. Studies may also require additional appointments, travel, or time commitments that could impact daily life. These practical aspects are just as important to consider as the medical ones.
Before joining a study, you will go through a process called informed consent. This means the research team will explain the study in detail, including its purpose, risks, benefits, and expectations, so you can decide whether to participate freely. You are always welcome to ask questions, take time to think about it, and discuss the decision with your family and doctor. It is important to note that joining a trial is voluntary, and you can leave at any time without affecting your regular medical care.
Many patients describe their experience as becoming active partners in research rather than merely receiving treatment. For some, this brings a sense of control in the face of an otherwise unpredictable disease. For others, however, the structured schedule can feel demanding. Experiences vary, and there is no single „right” decision.
Considering a clinical trial does not mean that you have exhausted all your options. Instead, it can be a way to explore new possibilities while contributing to progress in C3G and IC-MPGN research. The best choice is the one that fits your health situation, personal values, and daily life, and should be made with good information and support from your medical team.
Hyo Jin Heinz
Giulia Bassanese
Clinician in training
E-Mail: giulia.bassanese@med.uni-heidelberg.de
Kidney Glossary
ACE Inhibitor:
Used primarily to treat hypertension, heart failure, and protect kidneys in patients with diabetes or chronic kidney disease.
Albumin:
A protein made by your liver. Low albumin levels can be a sign of liver or kidney disease or another medical condition. It can lead to fluid leaking into tissue, called edema, and causing swelling.
Albuminuria:
The presence of the protein albumin in the urine. It usually indicates kidney damage or disease, because healthy kidneys normally prevent albumin from leaking into urine.
ARB:
Angiotensin Receptor Blockers (ARBs) are a class of blood pressure-lowering medications (e.g., losartan, valsartan) commonly used to treat chronic kidney disease, especially in diabetic patients, by slowing kidney damage. They work by blocking the angiotensin II hormone, which relaxes blood vessels and reduces kidney strain, lowering proteinuria (protein in urine).
Autoimmune Disease:
Occur when the immune system mistakenly attacks healthy body cells, causing chronic inflammation and damage to tissues and organs.
Biopsy:
A kidney biopsy is usually required to diagnose C3G and IC-MPGN. It is a procedure in which a small piece of kidney tissue is removed using a needle. This tissue contains tiny filtering units called glomeruli, which clean the blood. The sample is then examined by a kidney specialist (renal pathologist) using different laboratory techniques.
C3:
Complement component 3 (C3) is a vital blood protein that acts as the central hub of the complement system
C3a:
C3a in the kidneys refers to a small, pro-inflammatory protein fragment (anaphylatoxin) generated by complement system activation. It acts through C3a receptors (C3aR) on renal cells, often driving inflammation and fibrosis in conditions like lupus nephritis and diabetic nephropathy.
C3b:
C3b in the kidneys refers to the accumulation of an activated complement protein (part of the immune system) within the kidney’s filtering units (glomeruli), which is the hallmark of C3 Glomerulopathy (C3G). This buildup causes inflammation, damages the glomeruli, and can lead to kidney failure.
C5:
Complement C5 is a key pro-inflammatory protein in the innate immune system that, when overactivated, drives kidney inflammation, fibrosis, and injury. It is cleaved into C5a (a potent inflammatory mediator) and C5b (part of the Membrane Attack Complex), acting as a major therapeutic target in renal diseases like diabetic nephropathy and atypical hemolytic uremic syndrome (aHUS).
C5a:
C5a is a highly potent, pro-inflammatory fragment of the complement system that acts as a powerful initiator of inflammation and tissue injury within the kidneys. Formed by the cleavage of complement component C5, C5a binds to receptors (C5aR1/C5aR2) on renal cells, driving inflammation, fibrosis, and damage in conditions like lupus nephritis and diabetic nephropathy.
C5b:
C5b is a component of the complement system that triggers the formation of the Membrane Attack Complex (MAC, or C5b-9). In the kidneys, uncontrolled activation leads to C5b-9 deposition, causing cellular damage, inflammation, fibrosis, and proteinuria in diseases like IgA nephropathy, Membranous Nephropathy, and C3 Glomerulopathy.
Cell Proliferation:
An increase in the number of cells.
Creatinine:
A waste product in the blood produced by the natural breakdown of muscle tissue and protein digestion. Kidneys filter creatinine from the blood and remove it through urine, making blood creatinine levels a primary indicator of kidney function.
Dipstick Test:
A diagnostic tool used to screen for health issues by dipping a specially treated, color-changing plastic strip into a urine sample.
Edema:
Swelling caused by excess fluid trapped in body tissues, often seen in the legs, ankles, or around the eyes.
eGFR (estimated glomerular filtration rate):
A blood test–based estimate of how well your kidneys are filtering waste from the blood. It is used to assess kidney function and stage kidney disease.
Electron Microscopy:
This technique is used to visualize structural changes and the specific location of complement protein and/or immunoglobulin deposits. EM helps differentiate C3G and IC-MPGN from post-infectious glomerulonephritis and other glomerular diseases.
Flare:
The disease becomes increasingly active and can be triggered by infections and other diseases.
Genetic Variants:
A permanent alteration in the DNA sequence of a gene, differing from the most common sequence. These changes, also called mutations, can be inherited or acquired. Variants can be benign, pathogenic (causing disease), or of unknown significance.
Glomeruli:
Tiny filtering units in the kidneys. Each glomerulus is a small cluster of blood vessels that filters waste, excess fluid, and toxins from the blood to form urine.
Glomerulonephritis:
Inflammation of the kidney’s filtering units (glomeruli). It can reduce kidney function and cause blood or protein to appear in the urine.
Gut Microbiota:
Vast, complex community of roughly 100 trillion microorganisms—including bacteria, viruses, and fungi—residing in the human digestive tract. Often considered a „hidden organ,” it contributes to immune regulation, digestion, vitamin synthesis (such as vitamin K), and protection against pathogens.
Hematuria:
Presence of blood in the urine. It can be classified as:
Macroscopic (gross) hematuria
– Blood is visible to the naked eye; urine appears red or brown.
Microscopic hematuria – Blood
is not visible but detected under a microscope or with a urine test.
Both can indicate kidney, urinary tract, or bladder problems.
Hepatitis:
Inflammation of the liver, commonly caused by viral infections, alcohol abuse, toxins, or autoimmune diseases.
Idiopathic:
Meaning that the cause of the disease is unknown.
IgA Nepropathy:
IgA nephropathy (also known as Berger’s disease) is a chronic autoimmune kidney disease that occurs when immunoglobulin A (IgA) antibodies build up in the glomeruli of the kidney, leading to kidney inflammation.
Immunofluorescence:
This technique shows whether there is C3 or immunoglobulin staining and, if so, how intense the staining is.
Immunoglobulin:
Also called antibodies; they are essential in protecting against bacteria, viruses, and fungi.
Inflammation:
The body’s natural immune response to injury, infection, or irritation, designed to protect and heal damaged tissue.
Lupus:
A chronic, autoimmune disease where the immune system mistakenly attacks healthy tissues and organs, causing widespread inflammation and damage to joints, skin, kidneys, blood, heart, lungs, and brain.
Membrane:
A thin biological structure that acts as a selective barrier. In the kidney, the glomerular basement membrane plays a key role in filtering blood.
Metabolic Acidosis:
Serious condition where too much acid accumulates in the body’s fluids (blood pH < 7.35) or when the body loses too much base (bicarbonate). It is caused by increased acid production, reduced kidney function, or severe bicarbonate loss. It is often caused by diabetic ketoacidosis, severe kidney disease, or shock.
Metabolic Health:
How efficiently your body processes food, uses energy, stores fat, and responds to hormones like insulin.
Non-Specific Immunosuppressive Medication:
Medicines that lower the activity of the immune system in a general way. They are used to treat autoimmune diseases or prevent organ rejection after transplantation, but they can make the body more vulnerable to infections.
Pathogens:
Microorganisms such as bacteria, viruses, fungi, or parasites that can cause disease by damaging cells, producing toxins, or triggering harmful immune responses.
Protein:
Essential macronutrients made of amino acids, acting as the building blocks for body structures like muscles, skin, and hair. They are complex, folded molecules that power chemical reactions (enzymes), carry oxygen (hemoglobin), and support immune function. Proteins are vital for growth, repair, and satiety.
Proteinuria:
Presence of excess protein in the urine. It usually indicates kidney damage or disease, since healthy kidneys normally keep protein in the blood.
Remission:
The disease is not active.
Serology:
The study and testing of blood serum to detect the presence of antibodies or antigens, often used to diagnose infections or immune responses.
Tissues:
Tissue is a group of cells that have similar structure and function together as a unit.
Uremic Toxin Generation:
The production of harmful waste compounds that accumulate in the body when kidney function declines.
