Adult Resources
We understand that even as adults living with PROS, the road ahead isn’t always smooth & we encounter many bumps along the way. Whether this be physical in nature or psychologically or even both.
We have put together some information from various websites and also slides from our family weekend where the charity Rare Minds gave a unique presentation on living with PROS & mental health.
This is an article written by James, who lives with PROS. Entitled “Places we take ourselves” This is found on the Rare Disease Website here: James’ Story
Mental Health Resource Website dedicated to mental health.
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*
Living with a rare condition: the effect on mental health
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.
- Why don’t men talk about mental health?
- Is depression different for men?
- Suicide and men
- What can I do if I’m worried about my mental health?
- I’m worried about someone’s mental health. How can I help them?
Having lived with chronic pain and involuntary muscle contractions from a neurological movement disorder called dystonia since 2001, I felt defeated many times. But I am still here battling every day… and so are you! This is resilience: How resilient are you?
Check out this great resource from our friends at Beacon, links to a number of mental health websites, helplines, general & specialised ones: Beacon Resource Hub
Beacon also have a mental Health Resource list covering help for everyone (adults, children & young people) Mental Health Resource List
I came across this great resource video from MPS Society UK focusing on helping adults with their mental health & wellbeing: MPS Society – mental health & wellbeing
- Why don’t men talk about mental health?, Is depression different for men?
- Suicide and men
- What can I do if I’m worried about my mental health
- Men & Mental Health
