Talking about your rare kidney disease
Living with a rare kidney disease can be physically and emotionally challenging. People around you may not understand what you are going through. Many people with rare diseases say that feeling alone or isolated is one of the hardest parts.
Download our guide on why it is important to talk about living with a rare disease
If you have a rare disease, your life might look different than your friends or family members. You may take a lot of medicines, miss school regularly for doctor’s visits or have days when you feel tired or are in a lot of pain. There may also be things you’re not able to do like playing sports or eating some kinds of food.