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.

Rare Minds have also recently developed their new wellbeing hub. It is here to help you navigate some of the more common emotional challenges that are often shared across rare conditions. 

Whether you have been living with your condition for some time, or if you are currently facing a particularly emotionally challenging period: Rare Minds Wellbeing Hub

Our friends at: HEVAS have created a video looking at what it is like growing up with FIL: Growing Up with a Rare Visible Condition: Personal Journeys of Facial Infiltrating Lipomatosis

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.

How to look after your mental health in later life  Some people think that mental health problems are simply part of getting older. This isn’t true and doesn’t have to be the case. The Mental Health Foundation have produced this booklet for people in their 60s who are approaching retirement or who have recently retired from work. During this big change, it’s important to take care of ourselves mentally as well as physically.

Their booklet suggests 10 practical ways to do this.

How to look after your mental health using mindfulness  This guide provides you with tips on how to look after your mental health using mindfulness.

How to look after your mental health using exercise There are many reasons why physical activity is good for your body – having a healthy heart and improving your joints and bones are just two, but did you know that physical activity is also beneficial for your mental health and well-being?

How to manage and reduce stress Stress is a feeling of being under abnormal pressure, whether from an increased workload, an argument with a family member, or financial worries. This guide provides you with tips on how to manage and reduce stress.

How to manage anxiety and fear  This guide provides you with tips on how to manage feelings of anxiety and fear.

Mental health facts and statistics Learn how common mental health problems are. And statistics about risk factors and mental health treatments. This page includes statistics about suicide and self-harm. 

On this page:

Rare Minds Wellbeing Hub Resources and information to help you live as well as possible with your rare condition.

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.

Men and mental health

  • 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

 

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

SOCKS:

We know that many of you struggle to find socks that are wide enough for those of us living with overgrowth in our lower limbs. After asking the PROS community & online research we have a list of places & companies.

Some are located in the UK, others in the USA, Canada & Europe.

Not all have been used by the community but I have highlighted the ones which have for your convenience.

Companies based in the UK:

  • Medalin LTD, 19 Wenlock Way, Thurmaston, Leicester LE4 9HU.

  • Rahhint Extra Wide Merino Wool Diabetic Socks for Men & Women, Seamless Toe loose fit, Soft Top No Binding Cuff: Link to Amazon site

    • Suggested by leader of rare condition group.
  • Walk Tall Socks
    • Used previously by someone with overgrowth of their lower limbs.

Company based in Europe:

  • VITsocks
    • Based in Europe
    • Found online, not used.

Companies based overseas:

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