Avsnitt
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This podcast was recorded as an Instagram Live.
The Good, The Bad and The Wobbly book by Eva Abley, all proceeds go to Birmingham Children's HospitalSpread the Kindness school programme by Eva AbleyCP TeensScope CP Network 18 years old and over.Cerebral Palsy Adult Advice UK
Meet Eva Abley, the unstoppable force behind the memoir "The Good, The Bad and The Wobbly." At only 16 years old, Eva takes us on a journey through her life, from managing her symptoms of cerebral palsy to her experiences in the educational system and the highs of performing on stage.
Eva is honest in our chat about her life, which hasn't been plain sailing. Through harmful attitudinal experiences at school with friendship groups and teachers, Eva's mental health has been severely affected. Now Eva has coping strategies and uses her experiences to advocate for disability awareness and acceptance through her schools programme, Spread the Kindness. At college, Eva is studying Health and Social Care.
Eva's story is about growth, acceptance, and the power of being true to oneself. It reminds us of the impact we can have when we stand together for inclusivity.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For supportHosted by Chantal Boyle, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
Gabrielle Hine shares her life-altering journey with Functional Neurological Disorder (FND) and fibromyalgia. Gabby experiences symptoms such as paralysis, non-epileptic seizures and blindness daily. Gabby paints a vivid picture of how these misfired signals within her nervous system have reshaped her life, leading to a cascade of challenges like anxiety and not being able to work.
We talk about the societal misconceptions that often accompany non-visible disabilities. From the frustration of slurred speech to the heartbreak of having to step away from a career, our conversation delves into the complexities of living with FND and fibromyalgia. We also touch on the unique ways these conditions manifest in individuals, emphasising the importance of personalising support and understanding.
FND Hope UKFND Hope InternationalFibromyalgia UK
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
Saknas det avsnitt?
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“People say to me things like, oh, you can't be autistic. That's not right. You make eye contact, or you do public speaking for your job… I didn't disclose it until I was forced to due to work issues.”
Peta Hooke interviews Ashlee, an autistic woman and a mother of three amazing children who are also autistic. Ashlee talks about coping with unexpected change, the challenges of invisibility and the pressure to disclose. She also talks about how wearing the Sunflower can provide comfort and a feeling of security to people with Autism and would like to see more of it in Shopping environments.
For more information about Autism, please visit https://hdsunflower.com/au/insights/post/autism
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com -
Richard Luke from Scope and Karen Watson from Cerebral Palsy (CP) Adult Advice Service UK joined the podcast to answer questions from the Sunflower community about CP.
Cerebral Palsy develops before, during or soon after birth, and in this conversation, we discuss the fundamental issue of NHS care after childhood, leaving a gaping void in ongoing support. The episode also uncovers why CP, a complex condition, remains shrouded in misconceptions.Richard and Karen generously share personal stories, shattering stereotypes and shedding light on the real experience of living with CP and examine the gaps in healthcare, education, and employment, we also discuss the socioeconomic disparities within the CP community.
CP TeensScope CP Network 18 years old and over.Cerebral Palsy Adult Advice UK
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For supportHosted by Chantal Boyle, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
“You have mental health challenges, but you are still who you are.”
Peta Hooke interviews Joshua about Mental Health and Tourette’s Syndrome. Joshua discusses challenges in public places that cause severe anxiety, and how the Sunflower can help. Joshua would like to see stronger support across essential services such as public transport networks and supermarkets.
Mental health is a state of mental well-being that enables people to cope with the stresses of life, realize their abilities, learn well and work well, and contribute to their community. If you’re going through a hard time right now, the Beyond Blue Support Service is available 24/7 for brief counselling. Call a counsellor on 1300 22 4636 or chat to a counsellor online here www.beyondblue.org.au
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com -
Unlock the secrets to thriving as a self-employed individual with disabilities in our latest episode featuring Lydia Wilkins, a freelance journalist and editor at Disability Review magazine. Hear Lydia's compelling personal journey as she navigates the workforce as an autistic person living with long COVID. We tackle the significant disability employment gap in the UK and explore why traditional nine-to-five office jobs often fall short in accessibility, making a strong case for the financial and personal benefits of freelancing.
Disability Review Magazine PIP - Personal Independence PaymentAccess to WorkAccessAble
Discover the essential support systems available for freelancers with disabilities, including Personal Independence Payment (PIP), and how they are crucial in managing day-to-day needs.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
“People judge before they stand back and think, you know, there might be another reason for, for a person behaving the way that they do.”
Peta Hooke interviews Helle about Pome disease and some of the everyday challenges Helle faces from getting dressed, to speaking to getting around.
Pompe disease is a rare, inherited, and without treatment, often fatal muscular disorder. Pompe Disease is caused by a deficiency or total lack of the enzyme acid alpha glucosidase. This enzyme is responsible for breaking down excess glycogen which normally accumulates in the muscles.
For more information about Pompe disease, please visit https://australianpompe.org.au/find-out-more/
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com
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Discover the vital role of the pituitary gland and its impact on our health with Gretchen Jordan, Associate Director of the Cushing Support and Research Foundation. Gretchen shares her compelling personal journey with Cushing's disease from diagnosis to advocacy. This episode uncovers the critical functions of cortisol and the often-overlooked symptoms of this rare condition, emphasising the need for greater awareness and early diagnosis.
Cushing's Support and Research FoundationWorld Alliance of Pituitary OrganisationsThe Pituitary Foundation UK
Learn how non-specific symptoms like weight gain, high blood pressure, and emotional instability complicate the diagnosis of Cushing's disease. We discuss the importance of recognising these symptoms early to improve quality of life and reduce the risk of severe complications.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
“My brain is having to put in a lot of coping mechanisms to be able to just be in that space or in that place.”
Peta Hooke interviews Isabella about intersectionality in youth, disability and mental health. Isabella (Belle) identifies as a neurodivergent (autistic & ADHD) Greek (CALD) queer/asexual empath with binge eating disorder (BED), learning and psychosocial (permanent & ongoing anxiety & depression) disabilities.
Belle chats about challenges caused by general misunderstandings, and how the Sunflower can help. Belle is a passionate advocate and has a blog well worth subscribing to, https://www.divergents.info/publications.
Mental Health: If you’re going through a hard time right now, the Beyond Blue Support Service is available 24/7 for brief counselling. Call a counsellor on 1300 22 4636 or chat to a counsellor online here www.beyondblue.org.au
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com -
Language warning: Strong language used in this podcast.
Content Warning: Please be advised that this episode contains strong language and discusses suicide.
"...If you don't get out and build your bridge yourself, you'll never get anywhere..."
Tourette Syndrome (Tourette's) is a neurological condition that causes individuals to make involuntary vocal noises and movements called tics. Swearing or saying inappropriate things only affects 10% of people with Tourette's. For more information about Tourette's Syndrome, please visit here.
This month, our Sunflower Conversations Podcaster in Australia and New Zealand, Peta Hooke, interviews Leighton (Uncle Tics) from New Zealand about Tourette's Syndrome. Leighton discusses his experience with public opinion, employment opportunities and having the courage to try new things.If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
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This month, our Sunflower Conversations Podcaster in Australia and New Zealand, Peta Hooke, interviews Alana talking about schizoaffective disorder, a combination of schizophrenia and bipolar disorder. Alana discusses her experience with hallucinations and multi-sensory delusion, and how the Sunflower can help in employment and education environments.
Schizoaffective disorder is a combination of two mental illnesses – schizophrenia and a mood disorder. The main types of associated mood disorder include bipolar disorder (characterised by manic episodes or an alternation of manic and depressive episodes) and unipolar disorder (characterised by depressive episodes). For more information, please visit here.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
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Martin Cornally shares his experience of the rare pituitary disease called acromegaly. Hear firsthand how a pituitary tumour led to excessive production of growth hormone, causing severe physical changes, including osteoarthritis. Despite undergoing two surgeries, Martin continues to fight this chronic and life-long condition, shedding light on the crucial need for early diagnosis and increased awareness among medical professionals.
World Alliance of Pituitary OrganisationsThe Pituitary Foundation IrelandThe Pituitary Foundation UK
Explore the differences between acromegaly and gigantism, conditions that, though related, manifest at different stages of life. We discuss this rare disease's emotional, physical, and financial impacts, highlighting the importance of recognising subtle symptoms early on. Martin's symptoms include severe headaches, significant weight gain, and enlarged organs, which underlines the challenging journey of living with acromegaly and the importance of timely, accurate diagnoses.
In this episode, we also delve into the broader challenges of invisible disabilities, and co-host Scott shares how he has coped with having multiple brain aneurysms.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
Hosted by Chantal Boyle and Scott Casson-Rennie, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
Our guest is Rachel Bilski from the charity PTSD UK. PTSD stands for Post Traumatic Stress Disorder and is typically associated with veterans. However, it isn't only veterans who can develop it – And Complex Post Traumatic Stress Disorder, CPTSD, is less well known and, therefore, can take longer to diagnose.
PTSD UKPaul's blog (RE "brave")Rachel Bilski's blog (emotional flashbacks)Down to Earth Yoga Therapy
Rachel's lived experiences of CPTSD contribute to her work as a lecturer and supervisor for the Minded Institute for Yoga Therapy Training Institute. We put your questions to Rachel during this conversation and learned about the differences and nuances between PTSD and CPTSD.
We look into the complexities of emotional flashbacks and the varied manifestations of symptoms that can profoundly impact daily life.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For supportHosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
This month, our Sunflower Conversations Podcaster, Peta Hooke, interviews Althea, talking about ADHD and Autism.
The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them.It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com -
Our guest is Amy Kelly, Head of Communications and Fundraising at Crohn's & Colitis Ireland. Amy was diagnosed with Crohn's Disease when she was 27 and shares her lived experiences and the impacts and adjustments she has made to her life.
Amy explained that inflammatory bowel disease is an autoimmune disease and how it differs from irritable bowel syndrome (IBS). Amy walks us through what the symptoms are and shares some interesting statistics about the impacts of IBD on patients.
The 'poo taboo' campaign seeks to encourage and educate what healthy bowel movements are and what they should look and feel like to help spot and seek diagnosis at an earlier stage.
Amy also hosts the "GutCast" podcast – the first podcast for people living with inflammatory bowel disease (IBD) in Ireland.
Crohn's & Colitis IrelandCrohn's & Colitis UKGutCast podcast
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For supportHosted by Chantal Boyle and Scott Casson-Rennie, Hidden Disabilities Sunflower.
If you enjoyed this podcast please leave a rating and review. Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
This podcast was recorded as an Instagram Live.
CONTENT WARNING. The terms suicide and eating disorders are referenced. Please visit your healthcare provider if you are concerned about any issues relating to this topic.
Anna Cooper, co-founder of the Menstrual Health Project, and Dr Rebeccah Tomlinson joined us to answer questions from the Sunflower community about Premenstrual Dysphoric Disorder (PMDD).In addition to explaining the differences between PMDD and PMS/PMT, they advised on how to seek support and discussed how important it is to track one's cycle.
Questions from the community:1. What are the common symptoms of PMDD?
2. What’s the tipping point where PMS becomes PMDD?
3. How do people cope with PMDD / what accommodations do people give themselves?
4. Is there a possibility that the symptoms get less severe or even completely stop by itself?
The Menstrual Health Project
Disclaimer: Any reference that talks about women includes people assigned female at birth.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For supportHosted by Chantal Boyle, Hidden Disabilities Sunflower.
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If you enjoyed this podcast please leave a rating and review. Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
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CONTENT WARNING. We touch upon suicide, eating disorders and self-harm. Our guest will talk about her lived experiences, and signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic.
This podcast was recorded as an Instagram Live.
For years, Amani battled with anxiety, rage, suicidal thoughts and attempts, which she attributed to severe CPTSD and the other symptoms she experienced were attributed to endometriosis and adenomyosis.The turning point arrived after being put into chemical menopause while waiting for a hysterectomy. The suicidal thoughts disappeared, Amani instantly felt better, and that is when she discovered that she had been living with PMDD.
Amani talks about the treatments she had, implantable estrogen and the importance of community.
Amani's Instagram The Empty Uterus Club International Association for Premenstrual Disorders IAPMD The Menstrual Health Project
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For supportHosted by Chantal Boyle, Hidden Disabilities Sunflower.
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Want to share your story? email [email protected]
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
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Eve Jensch is 37 and was diagnosed with Parkinson's two years ago. Eve lives in Ireland with her three children and her husband and joins us to talk about her lived experience with Parkinson's. Parkinson's is a progressive neurological condition, which means that it causes problems in the brain as the cells stop working correctly and, over time, stop producing dopamine.
Eve is passionate about dispelling the myth that Parkinson's is an old man's disease. She uses her social media platform to create a community for everyone affected by it to connect, share, and help one another. Her social posts are often humourous despite the daily challenges she faces managing her illness.
Describing her symptoms and the treatment options available, we learn about how vital dopamine is for the body and the various ways in which it is administered.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
Parkinson's UK charityParkinson's Ireland charityEve's Instagram pd_and_me Hosted by Chantal Boyle and Scott Casson-Rennie, Hidden Disabilities Sunflower.
Want to share your story? email [email protected]
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
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Clare and her daughter, Matilda, join us to discuss Matilda's school experiences. Matilda is nine years old and in year five at primary school; she is autistic and has ADHD.
National Autistic Society
Friendships can be challenging because Matilda is autistic and doesn't always pick up on social cues. Having ADHD means she needs to be active. Matilda tells us about the adjustments her school has made to support her, including a visual timetable and movement breaks. Mum Clare shares her journey so far, first identifying the areas of daily life Matilda struggles with, then obtaining a diagnosis, and now pursuing a satisfactory EHC plan, which is crucial to ensure that they apply to the best secondary schools to meet Matilda's needs and that when she is there, she has access to adequate funding to support her.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For supportHosted by Chantal Boyle, Hidden Disabilities Sunflower.
Want to share your story? email [email protected]
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website -
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.
ONG.Awareness InstagramContact: [email protected]
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 supportHosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.
Want to share your story? email [email protected]
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website - Visa fler
