Cerebral palsy, learning difficulties, and anxiety with Bryony Moss

Bryony has cerebral palsy and right hemiplegia, which is a paralysis of the right side of the body. She also has learning disabilities, anxiety and non-epileptic seizures.

After receiving her diagnosis when she was academic year two Bryony was given splints to aid her walking along with physiotherapy and educational support which helped enormously. 

Unfortunately she suffered bullying and isolation at school which has led to anxiety and PTSD.

In spite of the emotional trauma she is a strong young woman who has a passion for animals and performing arts.

Bryony’s adoptive parents provide her with love, stability and the support that she needs along with a support worker who accompanies her so that she can live an independent life.

Bryony explains how attitudes towards disability need to change - and for everyone to realise that disability isn’t t scary.

If you are experiencing any of the issues discussed in this podcast contact your GP.

For support

• Samaritans or call 116 123
•  Childline or call 0800 1111
•  CP Teens
• Cerebral Palsy Guide - USA

 Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.
    
 Want to share your story? email [email protected]

Dyspraxia, dyslexia and dyscalculia with Fire Phoenix Rising 

Fire Phoenix Rising  is a poet and has dyspraxia, dyslexia and dyscalculia – or the triple D’s as she affectionately refers to them.

The dyspraxia went undiagnosed during her formative primary school years until her mum read an article about a dyspraxic child and recognised the similarities. Fire Phoenix Rising finds that she has no filter and has difficulty picking up social cues making it difficult to forge friendships.  Her coordination is also affected which presents as being clumsy.

Aged 19 she was diagnosed with dyslexia and dyscalculia is still to receive a formal diagnosis. 

Fire Phoenix Rising found writing poetry allowed her to express her emotions but at the time had no idea how talented she was. She has won competitions and received funding to film and record her work. Fire Phoenix Rising is very busy and is passionate about shining a light on disability, homelessness and women’s equality. We are delighted that Fire Phoenix Rising is one of the judge’s for the Hidden Disabilities Sunflower 2022 poetry competition Getting around - invisible disabilities and me.

If you are experiencing any of the issues discussed in this podcast contact your GP.

Organisations that offering support

Shelter
Odd Arts
Women’s Voices Movement
Poison Apple Theatre
Back on Track
Changing Futures

 Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
   
  Want to share your story? email [email protected]

The Sunflower Conversations – Cerebral Palsy with Peta Hooke

Peta has cerebral palsy which affects her mobility. Peta uses a wheelchair as she cannot stand or walk independently, she also uses a hoist to shower.

The cerebral palsy was caused at birth when she experienced a lack of oxygen for few seconds.

At 12 Peta had an operation which went wrong and stretched her nerves too much resulting in chronic nerve pain. Extensive therapy was necessary to re-educate her brain to overcome the pain. 

Peta approaches life with determination, her outlook on life is positive and has led her to start her own business as a podcaster on her show called I Can’t Stand. As a Disabilities advocate her aim is to educate everyone about what it is like to have a disability, and remove the ‘pity tilt’ of the head.

In Peta’s words “nothing is wrong, I am just being myself.”

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

Further information

I Can’t Stand podcast

 Hosted by Paul Shriever, Hidden Disabilities Sunflower.
   
 Want to share your story? email [email protected]

Desmoid tumour with MaryBeth Eiler
MaryBeth has a rare, aggressive tumour which is called a Desmoid Tumour. 
In this conversation we hear about the different types of chemotherapy MaryBeth received and had how the tumour severely affected her mobility.

MaryBeth also talks us through the workplace adjustments that her employer made to accommodate her health condition.

In spite of the anxiety she can experience because of the desmoid tumour she is focused on advocating for a cure or an approved FDA treatment, along with supporting people that have had similar journeys with their health.

If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US.


Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

The Sunflower Conversations podcast - Vascular Ehlers Danlos Syndrome  with Erica Baldwin
Erica has Vascular Ehlers Danlos Syndrome (VEDS) – a genetic condition which wasn’t diagnosed until adulthood.

In this conversation we hear how the VEDS affects her body, in particular her internal organs, which caused her to have a major ruptured colon.

During childbirth Erica’s body struggled to cope and she explains how that led to obtaining a diagnosis. Despite the affect to her mental health, physical health and work life Erica is positive and an absolute pleasure to talk to.

If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US.

 For support

• Ehlers Danlos Support UK
• Ehlers Danlos Society US

Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

Bowel cancer, LARS syndrome and stoma with Amanda Strother

Amanda was diagnosed with bowel cancer at 31 years old. After a successful operation to remove the cancer she developed major LARS which meant that not only was she in pain, she also needed to use the toilet between 30 to 40 times a day.

Eventually Amanda elected to undergo further surgery to have a colostomy bag and refers to this as the best decision she ever made. She has named her stoma Hope.

In the conversation Amanda is brilliantly honest and open, we talk about how the stoma works, what it looks like, what she can do, and other people’s perceptions.

Amanda is on a mission to educate and raise awareness of stomas.

If you are experiencing problems discussed in this podcast contact your GP.

For support

Colostomy UK 

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
  
 Want to share your story? email [email protected]

Post-Concussion Syndrome

Holly Tyrer lives in Hollywood, California and had her dream job as a Script Supervisor.

She was diagnosed with Post Concussion Syndrome (PCS) after an accident at work which resulted in a traumatic brain injury. Holly explains how it has altered every aspect of her life. She experiences sensitivity to light and sound, nausea and tremor and migraines. Her speech is also affected.

Holly has been working very hard using different therapies to improve her conditions and rebuild her neuropathways with a hope to eventually return to work.

If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US.

 For support

• The Brain Charity - UK
• Brain Injury Association of America 

 Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.
 
 Want to share your story? email [email protected]

Suddenly hit by PTSD with Danielle Allen
Danielle Allen is a mum to three children. Her eldest son Louis was born with a congenital heart condition called Coarctation of the aorta.

Suddenly six years later, and following the traumatic experience of Louis undergoing heart surgery  at 10 days old, Danielle experienced what she describes as a big black cloud which came from nowhere. 
 
She describes the profound impact that had her and the subsequent diagnosis of Obsessive Anxiety Disorder and PTSD. 

For support
Charity:
PTSD UK

The NHS advise that if you or your child are experiencing problems after a traumatic experience, or if the symptoms are particularly troublesome you should contact your GP.

 Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
 
 Want to share your story? email [email protected]
 
 Visit the Hidden Disabilities Sunflower website.

Radiation caused my hidden disability with Kellie La Follett
Kellie La Follett was caught in an unexpected mass radiation incident at the school she worked in. Unfortunately Kellie was sitting at the epi centre of the radiation which has left Kellie in pain 24 hours a day that has increased over time.

In-spite of the extreme pain and light sensitivity that Kellie lives with she has campaigned to ensure that an event of this nature cannot occur again. 

Kellie uses her experiences to offer support to people in the US, writing blogs and bringing people together, as well as being a keen advocate for the Hidden Disabilities Sunflower in the US.

Find out more about Kellie La Follett

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

Visit the Hidden Disabilities Sunflower website.

On the Road series - Living with Fibromyalgia 
Sue McIntosh developed fibromyalgia after being involved in a traffic collision. No longer able to continue her career as an advanced driver in the Police force, she has since learnt how to self manage her symptoms and daily activities, such as driving, shopping and working.

Mindfulness has been hugely beneficial to Sue, as has a change of career into photography as she can fit it around her disability.

Driving now has its limitations, here Sue explains why On the Road with the National Highways and the Sunflower is a good idea.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

For support

• Fibromyalgia Action UK
• Order a free On the Road with the National Highways Sunflower car sticker

Contact
Sue McIntosh Photography on Instagram @suemcintoshphotography

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

Visit the Hidden Disabilities Sunflower website.