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Talking to Your Child

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When talking to a child with RKD, it’s important to approach the conversation with sensitivity, openness, and age-appropriate language. Here are some tips for communicating with your child

1) Find a quiet and comfortable environment where you can have a conversation without distractions. This helps your child feel secure and allows them to focus on the discussion

2) Use simple age appropriate language. Explain things in a way that they can understand. Avoid using medical terms unless your child is familiar with those terms.

3) Be truthful about your child’s condition and validate that what they are experiencing is difficult. Avoid providing false reassurances, but emphasize that you and the medical team are there to support and help them.

4) Encourage your child to ask questions and express their feelings. Be patient and ready to answer their questions honestly. This helps build trust and understanding

5) Depending on your child’s age, visual aids such as experiments, drawings, or age-appropriate books can help explain their condition and its treatment.

6) When appropriate, involve your child in discussions about their treatment plan or any decisions that affect them. This can help them feel more in control and empowered.

7) Let the child know that you are there to support them throughout their journey. Reassure them that they are not alone in facing their challenges.

8) Acknowledge and validate the child’s emotions. It’s normal for them to feel a range of emotions, including fear, sadness, or frustration. Encourage them to express their feelings and offer emotional support.

9) While it’s important to be honest, maintain a positive and hopeful tone. Focus on the aspects of their treatment and care that can improve their well-being.

10) Regularly check in with the child to see how they are feeling and if they have any new questions or concerns. This ongoing communication helps build trust and keeps the lines of communication open.

Support

Get help coping with the challenges of living with FSGS through support groups like NephCure. Learn more about our how we can support you.

Nutrition

Eat a diet low in salt and processed foods to manage your blood pressure and reduce strain on your kidneys. Learn more about a kidney-friendly diet and get our cookbook.

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