Helpful resources:

We understand that living with a rare condition can bring up so many questions, including, but not limited to:
  • What is PROS?
  • How will my child cope with living with this?
  • How will I as a parent cope with this?
  • How can I help my other children / siblings?
  • I need specialised clothing &/or shoes, where can I go for these?
  • I feel like I am the only one, are there support groups out there?
On this page you will find various websites & articles that we hope may help.

WHAT IS PROS?

Please click on the links below for further information:

WHAT IS PROS

PIK3CA-related overgrowth spectrum

PSYCHOLOGICAL WELL BEING & SUPPORT:

Changing Faces  – This is a very informative website: We offer a wide range of Self-Help for adults, families and young people learn new techniques to handle living with an unusual appearance.

This includes advice on how to live with confidence, enjoy healthy relationships, prepare for school, handle bullying and feel confident about seeking work.*PLEASE NOTE THIS RESOURCE IS FOR ANYONE WITH A VISUAL PHYSICAL DIFFERENCE*

Coping with Unwanted Advice about Your Child’s Medical Condition  – Suggestions on how you might deal with comments or advice that people sometimes like to offer!

Living with a rare condition: the effect on mental health

PeaceLoveHeal – A blog about living with CLOVES (A condition within PROS)

Band-Aids & Blackboards – This is a site about growing up with medical problems. It’s goal is to help people understand what it’s like, from the perspective of the children and teens who are doing just that. These kids have become experts at coping with problems that most of you have never heard of & they’d like you to know how they do it.

Disarming Disability – Disarming Disability Podcast was founded in 2019. The podcast’s mission is to powerfully deconstruct disability through candid conversations with experts exploring topics related to disability. The podcast looks to educate, empower, voice, and build a more inclusive society.

CLOVES Syndrome support page  – There are some great links on this page as well as 2 publications created for kids with CLOVES

Spikes – and other ways disabled people combat unwanted touching– Bronwyn Berg became so fed-up with people manhandling her without asking, she put spikes on her wheelchair. And she’s not alone. With a spate of disabled people reporting unwanted touching some are taking action to stop it in its tracks.

4 Families take on rare disease – Confronted by illnesses that most scientists overlook, these families had to work out their own approaches to finding treatment.

CLOTHING & SHOE COMPANIES:

Bespoke Shoe Maker – I have used this company myself for many years & they are extremely good at creating footwear for complex conditions. Based in Derbyshire, UK.

Clothing Solutions – I have used this company to make me a pair of combat trousers, something I always wanted growing up! Lovely people with a lot of knowledge. Based in Bradford, West Yorkshire.

REENA Tailoring: used by one of our GoPI3Ks members & comes highly recommended: Unit A, Wellfield Court, 31 Pen-Y-Lan Road, Cardiff CF24 3PG. Phone: 029 2045 2040 Email: reena.tailoring@gmail.com

CLOVES Syndrome footwear resource – A great resource of information on footwear available in the USA. From bespoke companies to advice on mainstream companies that offer extra wide footwear & those that also sell 2 different size shoes.

ACCESSIBILITY GUIDES:

AccessAbleLooking for access to such things as restaurants, cinema’s hotels, universities & more within the UK, then this is the site for you.