Please note that any of the worksheets you find on the following pages can be sent directly to you. Please email us your details at Our email address

What is PROS?

PROS, which is also known as PIK3CA-Related overgrowth syndrome, is a term for a group of conditions that can impact growth in different areas of the body. These can include in vascular areas (such as blood vessels), skeletal areas (such as bone or limb differences), and skin differences. It can also impact other areas such as intellectual development and co-existing conditions like asymmetry in the face and macrodactyly. PROS is also a condition that can affect how someone looks, therefore, causing a visual difference in appearance. A visual difference is described as: “a distinct, noticeable physical feature on an individual’s body—such as a scar, mark, birthmark, or condition—that deviates from typical societal norms.”

Resources for support:

• The Visible Difference Parenting Toolkit is a booklet designed to offer support and advice to parents when their child has any kind of condition that can impact their appearance. It can be accessed as an e-book and is available for free here: The Visible Difference Parenting Toolkit – The Visible Difference Support Hub

• Loving ACTion is a resource made up of podcast episodes, external content and worksheets designed to help support people with conditions that affect their appearance in their romantic relationships.
• More information and the resource can be found here: Loving ACTion: Appearance and Romantic Relationships Programme – The Visible Difference Support Hub

• Thinking traps are negative thought processes that can impact how we see things. Thinking traps can sometimes mean we do not see a situation how it really is, because our negative thought patterns can affect this. There is a factsheet at the end of the page showing all these thinking traps.

• Catch it, Check it, Change it – This worksheet helps you to work through challenging thoughts by guiding you through a process to tackle one scary or difficult thought. There is also a completed example available for you to view.

• Guided Path Coaching and Hypnotherapy – James Ventham. James Ventham is an adult with lived experience of PROS who provides life coaching and hypnotherapy. This is a paid service, and James is graciously offering a £15 discount to his hour sessions for anyone who choose to take part in his sessions following the link in this site. To find out more, visit James’ site here: Guided Path Coaching & Hypnotherapy (coming soon)

• Brittany Jackson is a parent of a child with MCAP Syndrome. She has a website containing information about the condition and shares her experiences on blog posts. You can read more by viewing Brittany’s content here: What is MCAP Syndrome? | Navigating The Unknown

• Changing Faces is a website that provides support for children, parents and families living with a visual difference: Changing Faces

Our study:

Parents shared with us the uncertainty they felt for their child’s future and the impact of PROS on their own mental wellbeing. Here are some quotes from parents who took part in our survey: