The Sunflower Conversations Hidden Disabilities Sunflower
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- Health & Fitness
The Sunflower Conversations are where we explore hidden disabilities through the prism of the Hidden Disabilities Sunflower.In a world where it can be hard to feel like your story matters, we want to give you a space to share your experience. Whether you or someone you care about wears the Sunflower lanyard, we hope that by giving voice to these experiences, we can empower others and encourage more people to support people with invisible disabilities.
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Optic Nerve Glioma with Michelle Culbert and Karina Smith
Our guests are Karina Smith and Michelle Culbert, from South Florida, who both have Optic Nerve Glioma, a rare eye condition affecting sight that typically affects young children. It is a slow-growing brain tumour in or around the optic nerve, which connects the eye to the brain. As the tumour progresses, it presses on the optic nerve.
Karina and Michelle believe they are the only two adults in Florida with this rare eye condition. Sadly, there is very little knowledge, advice, and guidance on how to treat optic nerve glioma in adults.
They both explain how what the sudden onset of sight loss was like for each of them, physically and emotionally and the steps that they had to take to weather the mental health impact it took. We also hear about the treatment they have both had, which includes proton beam radiation therapy.
Together, they are reaching out globally to other people with rare eye conditions to create a support community where people can share their experiences.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
ONG.Awareness InstagramContact: ong.aware@gmail.comHosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.
Want to share your story? email conversations@hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
Eating Disorders, Autism and ADHD with Adam Fare
CONTENT WARNING. The topic is eating disorders, and throughout the podcast, our guest will talk about their lived experiences, as well as signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic.
Undiagnosed autism and ADHD have played a part in Adam developing an eating disorder at secondary school. He battled through excruciating pain until the point of becoming hospitalised and, as a result, being left irreparably physically damaged.
During the conversation, Adam shares his journey of recovery. He talks us through the different types of eating disorders and how they present. We also cover the dangers of diet culture, societal pressures, stigma and shame.
Adam has a stoma as a result of severe intestinal issues and a prolapsed bowel, as well as musculoskeletal syndrome, all of which leave him with chronic pain and fatigue.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
BEAT UKF.E.A.S.TFirst Steps EDHosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.
Want to share your story? email conversations@hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
Learning Disabilities with Dorothy Watson and Marcus Tanner, The Sunnybank Trust
Our guests are Marcus Tanner and Dorothy Watson, CEO of The Sunnybank Trust.
“The Sunnybank Trust supports adults with a learning disability across North East Surrey to have confidence, opportunities and control over their own lives and to be able to live without prejudice and discrimination.”
In our conversation, we tackle the myths and stigma attached to learning disabilities (LD) and what action must be taken to dispel them. The statistics see less than favourable outcomes for people with an LD with mental health and employability. For the most part, this is due to barriers to access.
There is an overwhelming call to collaborate and work with people with LD to share lived experiences and provide advice to improve disability inclusion. These actions will significantly improve life opportunities and access for the LD community.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
The Sunnybank TrustChallenges of people with learning disabilities in primary care animation We are Understand Us, the Learning Disability Experts film
Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.
Want to share your story? email conversations@hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
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Eating Disorders with Zoe Summers, BEAT UK
CONTENT WARNING. The topic is eating disorders, and throughout the podcast, our guest will talk about their lived experiences, as well as signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic.
Our guest, Zoe Summers, joins us to talk about eating disorders (ED), which remain a taboo subject and can be lethal. Through Zoe’s lived experience, she has become an Ambassador for the eating disorder charity BEAT UK.
In the conversation, we cover different types of eating disorders, and more specifically, binge eating disorder and orthorexia. Zoe explains the characteristics of these and how they affected her.
We chat about some of the reasons why eating disorders develop and what help and support exist to recover. As well as suggestions for approaching the subject and essential do's and don'ts about what to say to someone with an ED.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
BEAT UKHosted by Chantal Boyle, Hidden Disabilities Sunflower.
Want to share your story? email conversations@hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
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Stroke with Jo Aurora, Different Strokes, and Hayette Wilkinson
Jo joined us from the charity Different Strokes to answer Sunflower wearers' questions and to explain what a stroke is, the signs to look out for, and what action to take, as well as advice about the support available to patients.
Hayette had a stroke at age 32 and has been on a long journey of rehabilitation and recovery; she talks us through the surgeries she had and the everyday things that she has had to relearn through a multitude of therapies.
F.A.S.T
F is face.
A is arm.
S is speech.
T is time.
Different Strokes add two additional letters to the acronym B.E.F.A.S.T = B. Balance and E. Eyes - find out why by listening to the full conversation, which is packed full of helpful advice.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
Different StrokesHelpline 0345 130 7172 Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
Want to share your story? email conversations@hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
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Stroke and Hayette Wilkinson
This podcast was recorded as an Instagram Live.
Hayette is a mother, wife and stroke survivor. Aged 32 Hayette experienced a severe stroke called a subarachnoid haemorrhage, followed by an ischaemic stroke a few days later. A subarachnoid haemorrhage (SAH) is a life-threatening type of stroke, caused by bleeding into the space surrounding the brain.
Our conversation covers the journey Hayette has been on and the impacts the strokes had on her cognitive and physical abilities. Her work, her relationships and her ability to resume work.
Hayette, is a survivor in every sense of the word and this makes for a fantastic conversation.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support:
Different StrokesHeadwayStroke Association
Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
Want to share your story? email conversations@hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
Follow us on socials:
InstagramTik TokFacebookLinkedIn Twitter