Kids

What Is APDS?

APDS (Activated PI3K Delta Syndrome) is a rare condition that affects how the immune system works.
Your immune system is the part of your body that helps fight germs and keep you healthy.

For kids with APDS, the immune system can sometimes:

  • Get sick more often

  • Take longer to feel better

  • Need extra care and support

Having APDS is not your fault, and you didn’t do anything wrong.

What Might APDS Feel Like?

Everyone with APDS is different, but some kids might:

  • Get sick more than friends

  • Feel tired more easily

  • Have doctor appointments more often

  • Take medicine to help their immune system

It’s okay if this feels frustrating or unfair sometimes.

You Are More Than APDS

APDS is something you have, not who you are.

You are also:

  • A student

  • A friend

  • A teammate

  • An artist, gamer, helper, or leader

APDS does not define your dreams, talents, or future.

School, Friends & Activities

Kids with APDS can still:

  • Go to school

  • Have friends

  • Play sports or do activities (sometimes with adjustments)

  • Learn new things and have fun

Sometimes you may need:

  • Extra rest

  • Time to recover

  • Help from adults

That’s okay — everyone needs help sometimes.

Talking About APDS

You don’t have to explain APDS unless you want to.

If you choose to, you can say something simple like:

“I have a condition that makes my immune system work differently.”

It’s okay to ask questions.
It’s okay to say “I don’t want to talk about it right now.”

Feelings Matter

Living with a rare condition can bring up big feelings:

  • Sad

  • Mad

  • Worried

  • Left out

These feelings are normal.

Talking to:

  • A parent or caregiver

  • A trusted adult

  • A counselor

  • Another kid who understands

can really help.

You Are Not Alone

There are other kids and families who understand what it’s like to live with APDS.

The APDS Rare Disease Coalition is here to:

  • Share information

  • Support kids and families

  • Help doctors and schools understand APDS better

You belong here.

A Message for You

You are strong.
You are important.
Your voice matters.

APDS may be part of your story — but it is not the whole story.

APDS can look different for everyone. Some kids may have a few symptoms, while others may have more. Not everyone with APDS experiences the same things, and symptoms can change over time.

Some common symptoms can include:

  • Getting sick more often than other kids

  • Infections that take longer to go away

  • Feeling tired or low on energy

  • Swollen lymph nodes (small lumps in the neck, armpits, or groin)

  • Stomach or digestive problems

  • Trouble gaining weight or growing as expected

  • Needing more doctor visits or medical care

  • Feeling stressed, worried, or overwhelmed because of health challenges

Remember — having these symptoms does not mean you did anything wrong.

Everyone’s APDS Journey Is Different

APDS affects each person in their own way. Some kids may feel okay most days, while others may need more support. Doctors and families work together to find the best care plan for each individual.

You Are Not Alone

If you or your family have questions, worries, or just need someone to talk to, the APDS Rare Disease Coalition is here to help.

We can:

  • Help explain APDS in a way that makes sense

  • Connect you with resources and support

  • Help you feel understood and supported on your journey

Please reach out to the Coalition if you have questions or need support.
You are not alone — and you never have to face this by yourself.