Puberty and growing up with PURA syndrome

Information only, not medical advice. Every child with PURA syndrome is different. Please talk to your child's own doctors and therapists before making decisions about their care. In an emergency call 999; for urgent advice call NHS 111. Our disclaimer.

Easy read In short

Puberty is when a child’s body starts to change into an adult’s.
See a GP if signs start before age 8, or have not started by 15.
Explain changes early, little and often, with pictures.
Private parts are private. Teach public and private places.
Ask your school nurse, GP or Contact for help.

Read the full guide ↓

Puberty happens to every child

Disabled children grow up too, and go through the same changes as any other child. Contact says it helps to prepare your child for the changes before they happen, as far as you can (Contact).

The NHS says it’s normal for puberty to start any time between 8 and 14. If signs start before 8, it could be early puberty, and if puberty hasn’t started by 15, it could be delayed. It says to see a GP if you’re concerned (NHS).

PURA syndrome and puberty

MedlinePlus Genetics notes that some people with PURA syndrome have signs of a hormone problem, such as early sexual development (precocious puberty). In a 2021 study of 142 people with PURA, about 1 in 10 had delayed puberty. Most children will follow their own path, so tell your child’s GP or paediatrician if you notice changes that seem very early or late, or if anything worries you.

Explaining body changes

NHS children’s services suggest simple language, pictures and social stories, talking little and often, and starting early (Chelsea and Westminster, Sheffield Children’s). Contact says children need to learn the proper names for body parts, what changes to expect, and how to stay safe (Contact).

If your child uses AAC, symbols or signs, ask their speech and language therapist about adding words for body parts, feelings, pain and privacy, so they can tell you what’s happening. Unique’s puberty guide is written for families of children with rare chromosome and gene conditions.

Periods

Getting ready before periods start helps. Unique suggests a picture story, showing pads and how they’re used, and explains that period pants or reusable pads may suit some girls with sensory needs. If your daughter wears continence pads, extra sanitary pads may not be needed, but her pad may need changing more often (Unique).

New sensations like period pain can cause distress, and a young person who can’t say it hurts may show it in other ways (Chelsea and Westminster). A simple diary of periods, mood and any seizures can help you spot patterns. If periods are very heavy or painful, or seem to affect your daughter’s wellbeing or seizures, talk to her GP or paediatrician about the options. Never start or change medicines without their advice.

Privacy and dignity

NHS teams suggest simple, consistent rules: knocking before going into bedrooms, wearing clothes in shared spaces, and private behaviours only in private places (Chelsea and Westminster). Contact says that, as long as it’s safe, young people should be given privacy for private time (Contact).

As your child grows, think about how personal care is done in a way that respects their dignity, at home, at school and in respite. Writing it into their care pack helps everyone do it the same way.

Keeping safe

Young people with learning disabilities may be more vulnerable to unsafe situations (Chelsea and Westminster). The NSPCC’s PANTS rule is a simple way to teach that private parts are private and to tell a trusted adult if something feels wrong. Ask school how relationships and sex education will be adapted for your child.

Looking ahead

Puberty often comes at the same time as big changes in school, benefits and services. Our growing-up timeline (14 to 25) sets out what happens when in each UK nation. Contact’s free helpline can talk through any of it, and your school nurse, GP or community learning disability nurse can help with puberty questions.

Questions families ask

When should I see a doctor about puberty?

The NHS says to see a GP if signs of puberty start before age 8, or if puberty hasn’t started by 15. Mention it to your child’s paediatrician too, as some people with PURA syndrome have hormone differences.

How do I explain periods to a child who doesn’t use words?

Many families use pictures, social stories, objects and their child’s AAC or signs, and start early. Unique’s puberty guide and NHS children’s services have practical ideas.

Sources

Checked 1 Nov 2026. Rules, rates and services change, so always check the latest version.

Print the checklist

Take our one-page “what to ask” list to the appointment: EHCP and school or nursery meetings.

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