Information and support for young people 11-18 living with kidney disease
You're Not Alone
Living with kidney disease as a young person can feel challenging, but we're here to support you.This page contains information specifically for young people aged 11-18 about managing kidney disease alongside school, sports, social life, and preparing for transition to adult services.
Click any of the cards below to explore different topics. For more information about different kidney conditions and their treatment, visit the infoKID website.
School & Studies
Managing school and health alongside each other.
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Sports & Life
Staying active without compromising your health.
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Headspace
Dealing with stress, anxiety, and tough feelings.
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The Transition
Preparing to move up to adult clinics.
Read more →
School & Studies
Managing kidney disease alongside your education can be challenging, but with the right support, you can succeed academically while taking care of your health. Kidney disease can affect the way you learn so its really important to look after your kidneys.
Talking to Teachers
Your teachers need to know about your condition so they can support you. Your kidney team can provide a letter explaining:
Why you might need to use the bathroom more often
Times you might be absent for appointments
Any dietary requirements
How your learning might be affected
Emergency contact information
Managing Absences
Hospital appointments and feeling unwell can mean missing school. Here's how to stay on track:
Keep in touch with friends about what you've missed
Ask teachers for notes or work to do at home
Use online resources to catch up
Let your school know about planned appointments in advance
Special arrangements for exams
You may be entitled to special considerations for exams, such as:
Extra time
Rest breaks
Access to water and bathroom breaks
A separate room if needed
Speak to your school's SENCO (Special Educational Needs Coordinator) about this.Your doctor can write a supporting letter.
Sports & Activities
Having kidney disease doesn't mean you can't be active! Many young people with kidney disease play sports, exercise, and enjoy physical activities.
Can I Play Sports?
Most young people with kidney disease can participate in sports and activities. Always check with your kidney team first, but generally:
Exercise is good for you and helps you feel better
Drink the amount of fluids recommended by your doctors
Listen to your body and rest when needed
Let your coach know about your condition
What About Contact Sports?
If you have a fistula or peritoneal dialysis catheter, you'll need to be more careful with contact sports. Your team will advise you on:
Protective equipment you can use
Which activities are safest for you
How to protect your access site
Other Activities
If traditional sports aren't your thing, there are lots of other ways to stay active and healthy!
Gentle exercise: Walking, cycling, swimming
Mind-body activities: Dancing, yoga, martial arts
Creative pursuits: Drama, music, art clubs
Find activities you enjoy and that fit with your treatment schedule.
Mental Health & Wellbeing
It's completely normal to feel worried, angry, sad, or frustrated about having kidney disease. Looking after your mental health is just as important as looking after your physical health.
It's OK Not to Be OK
Living with a chronic condition is tough. You might feel:
Different from your friends
Frustrated about hospital appointments
Worried about the future
Angry about restrictions on your life
Tired of taking medications
All these feelings are valid and normal.
Who Can Help?
Don't keep your feelings bottled up. Talk to:
Your kidney team – including psychologists who specialise in kidney disease
Parents or family members who care about you
School counsellor who can provide support
Friends who you trust
Youth worker from your hospital
Peer Support
Connecting with other young people who have kidney disease can really help. They understand what you're going through because they're living it too.
Young Adult Kidney Group (YAKG)
The YAKG is a closed Facebook peer support group for kidney patients between 16 and 30.
As you get older (usually between 16-18), you'll transition from children's kidney services to adult services. This is an important step towards independence.
What is Transition?
Transition is the planned process of moving from paediatric (children's) care to adult care. It's not just about changing hospitals – it's about:
Taking more responsibility for your own care
Learning to manage your condition independently
Building relationships with your adult kidney team
Understanding your treatment and medications
When Does It Happen?
Transition usually happens gradually between ages 16-18, but it's different for everyone. Your team will work with you to find the right time. The process includes:
Transition planning meetings (starting around age 14-16)
Visits to the adult unit before you move
Meeting your new adult team
Overlapping care for a smooth handover
Building Independence
Start taking charge of your care now:
Know the names of your medications and what they do
Understand your condition and treatment plan
Manage your own appointments (with support)
Ask questions during clinic visits
Learn about your rights and choices
Support Programmes
The Ready Steady Go and Hello programmes can support you through the transition process. Ask your doctor about this.
Use your camera or a QR reader app on your phone or click on the buttons to unlock these videos instantly to give you more information on kidney conditions and how they are treated.
You are more than your kidney disease. Kidney disease is something you have, not who you are.
With the right support, treatment, and mindset, you can achieve your goals and live a full, active life. Don't be afraid to ask for help when you need it, and remember that your kidney team is always here to support you.
