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:
Guide to Expanded Access We know living with PROS can be very challenging & gaining access to medication even more so. Especially if there are no planned clinical trials in your country but you know of medication that has been used in other countries that could help. This guide to Expanded Access maybe of help to you.
- (For patients who are seriously ill and have exhausted available treatment options, and are not eligible
for clinical trials, Expanded Access may be a potential option to explore with their physician. In response
to patient feedback, Janssen created the Guide to Expanded Access (Guide) to support patients,
caregivers and health care providers in Canada and European countries seeking information about
Expanded Access. In collaboration with patient representatives, this Guide was created to support
anyone in search of country-specific information about Expanded Access (EA), also known as
Compassionate Use, or Pre-Approval Access (PAA).
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*
PeaceLoveHeal – A blog about living with CLOVES (A condition within PROS)
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.
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.
Meeting People When You Have a Visible Difference – Exploring why meeting people when you have a visible difference can be difficult & ways to possibly deal & cope with this.
Limb Loss & Limb Difference U.K UK charities and support groups joining forces to raise awareness of limb loss and limb difference.
CHILDREN'S MENTAL HEALTH & WELL-BEING:
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!
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.
CLOVES Syndrome support page – There are some great links on this page as well as 2 publications created for kids with CLOVES.
How to nurture a child’s mental health
How to relax – a guide for young people who look different A great resource comes from Changing Faces “How to relax – a guide for young people who look different.” From their website: “If you feel anxiety because you look different, it’s important to find ways to relax and feel calmer.”
Children’s Mental Health Week This is a great site full of resources that can be adapted for various settings. Growth Stories: to help start a conversation about growth and the different challenges we may face.
EXPLAINING PROS TO CHILDREN: Please see the following links from Novartis: https://www.understandingpros.com/talking-about-pros/
“The PROS” Comic Book
Follow a team of superheroes-in-training called “The PROS,” who each have a unique PROS condition. Together with their teacher, Professor P, The PROS help other kids living with PROS find support and community. For ages 8 years and up.
PROS Pals Workbook – Making connections at school
This printable workbook is full of fun and engaging activities, like fill-in-the-blanks, coloring, and connect-the-dots, that are designed for your child to complete with a peer to help them build shared understanding, empathy, and friendship. For ages 5 years and up.
Glossary of PROS Terms
Does your child have questions about PROS terms or some of the words they hear at doctors’ appointments? This glossary includes easy-to-understand definitions of common PROS medical and diagnostic terms. For ages 8 years and up.
Navigate conversations about PROS
The way you and your child discuss PROS with others will vary depending on whom you are speaking with and the goal of the conversation. The following 3 guides will help you effectively communicate at home, school, and the doctor’s office.
Talking About PROS
Not sure how to explain PROS? Want to share your experiences or explain why you don’t feel like answering questions? This guide includes tips for how to have effective conversations about PROS. For ages 12 years and up.
Talking About PROS at School
Classmates and teachers often have questions about PROS. This printable note card includes tips to help children decide what they want to share about PROS. For ages 8 years and up.
Talking About PROS at the Doctor’s Office
Make the most of upcoming appointments, and get tips for talking about PROS symptoms. For parents/caregivers and young adults.
School toolkit: explaining living with a rare disease to young children
Do you know a young child or a family who is dealing with acceptance and making friends at school? Are you a pre-school or kindergarten teacher, and a student in your class has a chronic health condition? Are you a parent or adult who believes in sharing the values of empathy and inclusion with young children? This website provides some great links & ideas to help: https://www.rarediseaseday.org/downloads/schools-toolkit-explaining-living-with-a-rare-disease-to-young-children/
For your use, please find the link to a children’s book, A Friendship Story, from established Serbian author Danijela Pešić, also known under her nom de plume Danijela Knez, who herself lives with a rare disease (Pulmonary Arterial Hypertension–PAH). She wrote this book inspired by her own childhood experiences. She collaborated with a children’s author on the project named Ivan Drajzl.
Download the PDF book in one of the following languages:
Albanian, Arabic, Catalan, English (UK), English (US), French, Finnish, Galician, Georgian, Greek, Hindi, Indonesian, Italian, Japanese, Latvian, Lithuanian, Macedonian, Mandarin, Portuguese (Brasil), Portuguese (Portugal), Romanian, Russian, Serbian, Spanish, Turkish, Ukrainian.
AMPUTATION & CHILDREN – HELPFUL RESOURCES:
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: firstname.lastname@example.org
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.