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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:

• 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

• More Than My Appearance is a writing resource that offers different writing tasks to complete over a week. The aim is to support adults with conditions that impact their appearance to feel better about their bodies.
• More information and the resource can be found here: More Than My Appearance – The Visible Difference Support Hub

• ACT It Out is a free mobile app available for people in the UK that offers six skill-building sessions. The aim of these sessions is to help people manage the challenges that can come with the way that you look using evidence-based theories.
• More information and the app can be found here: ACT It Out® – 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 page showing all these thinking traps. As well as a link to all the worksheets and factsheets.

• 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.

• Fear ladder is an exercise that helps you to slowly build your way up to a situation or experience that you find difficult. It involves thinking of a difficult situation and having that at the top of the ladder and slowly building your way up to it by increasing the fear level each time. You can access a blank copy of the ladder after the example below as well as in the resources section or can create one of your own if you choose.

• 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)

Our study:

Adults shared their experiences across many areas of life, such as finances and work, relationships, medical care, and mental wellbeing. Many shared that their condition caused them to not be able to work jobs they wanted to, or at all. Several also commented that they had to work part time to accommodate their pain and medical appointments.

In terms of mental wellbeing, several people shared that their condition could be isolating, confusing and painful. Some have shared how PROS has made them lack confidence in themselves and the way they look, especially around others. Adults gave mixed answers about medical care. Some had good doctors and knowledgeable specialists, and some felt they had to advocate for themselves as doctors were either dismissive or lacked sufficient understanding of PROS.

A selection of quotes & a video from the adults in our study are illustrated below: