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RKD & Mental Health

NephCure believes it’s important for people with rare kidney diseases to start talking about mental health early on in their disease journey. This helps in many ways, like getting help sooner, taking charge of your well-being, and creating a supportive community. NephCure is committed to making sure everyone we serve feels empowered to take charge of their health.

Mental Health Patient Panel

Our patient panelists shed light on the mental health struggles that many RKD patients experience, but also share the hope laced throughout their journeys.

This mental health discussion spotlights the panelists’ coping skills, support systems, and how they continue to brave their physical health battles in the midst of anxiety, depression, and stressors.

Watch on Youtube

Mental Health and Chronic Illness Webinar

The challenges of living with a rare and chronic kidney disease can affect not only the patient, but the patient’s entire family and support system.

This talk highlights the importance of mental health and the steps you can take to positively impact your quality of life.

watch on youtube

Mental Health Awareness Town Hall

Montrez Lucas, NephCure’s Associate Director of Patient Navigation, recently led a heartfelt discussion with patients on the mental health challenges of living with rare kidney disease.

This powerful panel dives deep into the emotional toll of their journeys, offering candid insights into the struggles they face. Through their shared vulnerabilities, these patients provide a compelling reminder of the unseen battles that accompany rare kidney diseases.

Watch on Youtube

It’s incredibly important for people with rare kidney disease (RKD) to start talking about mental health from the very beginning of their RKD journey.

Some Reasons Why Addressing Mental Health Early on is Crucial for Everyone Affected by RKD: 

Click on each arrow below to learn more.

Early Intervention

Detecting mental health concerns in their initial stages enables timely support and reduces the risk of these issues escalating over time. 

Patient Education

Starting mental health discussions early gives you a chance to learn more about how your condition can affect your feelings. You can also find out about the available resources and learn about coping mechanisms that can enhance their overall well-being.

Long-Term Resilience

Developing mental health awareness and coping strategies early can contribute to long-term resilience. RKD often involves ongoing care management, and taking care of your mental health from the start helps you handle challenges over time.

Building Coping Strategies

Talking about mental health early helps you learn ways to handle tough feelings and develop coping strategies right from the start. This helps give you the proper tools you need to deal with the emotional challenges that come with a rare kidney disease.

Holistic Care Planning

Talking about mental health early means mental health can be part of your overall care plan. This way, both your physical and mental health needs are considered when planning your treatment strategies and support services. 

Family and Social Support

Early conversations about mental health can also involve family members and caregivers, creating a supportive network from the beginning. This team approach helps create an environment where individuals feel surrounded by understanding and help. 

Empowering Patients

Encouraging patients to take an active role in discussing mental health empowers them to be advocates for their own well-being. It helps them speak up for what they need and encourages individuals to get the support they need throughout their RKD journey.

Normalizing Mental Health Conversations

NephCure encourages patients to talk about mental health early, making it a normal thing to discuss. This can help reduced the stigma and feeling of shame, and create a supportive environment where people feel comfortable seeking help.

Preventing Mental Health Complications

Some mental health challenges may arise as a reaction to the stress and uncertainties associated with a RKD diagnosis. By addressing mental health early, there is a potential to prevent or mitigate the development of more severe mental health complications.

Latest Resources

Informational Documents

Patient Empowerment Flyer

Fact Sheet

Congenital Nephrotic Syndrome & Infantile Nephrotic Syndrome

Video

The History & Innovation of C3G: Patient Summit Seminar with Dr. Corey Cavanaugh

Educational Materials

School Accomodations

ALL RESOURCES

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