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.
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Understanding your disease
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​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
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​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
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​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.
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Connect with others
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​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.
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Recommendations:
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​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​​​
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Nephrologists’ advice
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​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?
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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?
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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?
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​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?
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​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?
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​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?
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​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
