Children and Young People

Being diagnosed with a rare, long-term health condition in your early years can be challenging for young people and their families. A lot of young people with pituitary conditions feel different from their friends and worry about missing out on normal childhood experiences, such as school, holidays and further education.

Whilst there will be additional things to consider to manage a child’s condition and help them stay healthy, it’s very possible for them to have the same experiences as friends and other young people. Below are a few inspiring stories from young members of our community, who haven’t let their pituitary conditions hold them back.

Young people’s stories

Defying expectations and shaping your own experience 

Since being diagnosed with panhypopituitarism in childhood, Aleha struggled with the limitations placed on her by others. Instead of being defined by her condition, she chose to push past others’ expectations and decide for herself what her future would look like.

School, netball and a pituitary tumour 

Tessa shares her experiences of going to school, making friends and learning to stay positive after her diagnosis of a craniopharyngioma.

What we’ve learnt as parents of a child with a pituitary condition

We spoke to Emily and Mike, who shared their experiences of family life and the things they’ve learnt, after their daughter was diagnosed with a craniopharyngioma.

Longer reads and videos

Monkey has a blood test

Through pictures of Monkey and colourful text, this booklet explains to children the process of having blood taken, making it look fun and less daunting.

Pituitary conditions and children: Birth to 5 years

From diagnosis, treatment and monitoring through to sick day rules, childhood vaccinations and nursery, this is a great guide for the early years of your child’s life.

Pituitary conditions and children: 5 to 11 years

From school and puberty to transitioning to adult endocrine services, this booklet covers everything you need to know to support your child as they age.

AI info pack for children & parents

A pack of essential resources for children with adrenal insufficiency, including a care guide to share with schools.

AVP-D info pack for children & parents

A pack of essential resources for children with AVP deficiency, including a care guide to share with schools.

For teens: Living with hypopituitarism booklet

This A5 booklet provides answers to common questions about living with hypopituitarism as a teen and young adult.

For teens: Living with AVP-D (diabetes insipidus) booklet

This A5 booklet provides information about Diabetes Insipidus for teenagers and young adults.

Hydrocortisone advice for parents

Information for parents about when to increase your child’s steroid dose, travelling, sick day rules and what to do in an emergency.

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Upcoming events

Caring for a child with a pituitary condition

02/10/2025

Join us for an online event this Pituitary Awareness Month.

Stories from young people and their parents

Teagan’s Story: Prolactinoma and University

Starting University with a Pituitary Condition

Aurora and Jenna’s Story

Grace’s Story: Macroprolactinoma

More information for young people

Further information

Child Growth Foundation 

The CGF provide expert information and support for children with growth conditions, including those caused by pituitary conditions. They have a great selection of videos and infographics for parents and children.

See more

Young Minds Trust 

The Young Minds Trust provide mental health support for young people and their parents.

View their website

Our Young People’s Support Group regularly meets online and provides community and support for young adults (18-30) with pituitary conditions. You can sign up to their next meeting or follow them on Instagram, @young.people.support.group

Find out more