Shows
The Sunflower ConversationsHearing Loss with Lidia Best, European Federation of Hard of Hearing PeopleLydia Best, President of the European Federation of Hard of Hearing People (EFHOH), shares her personal journey with hearing loss and explains the barriers faced by the Deaf and hard-of-hearing community. We discuss the emotional impact of hearing loss, technological solutions like cochlear implants, and practical ways to create more inclusive communication environments.Lidia explains what accessibility challenges exisit in various settings and explores what businesses and individuals can do to support those living with hearing loss and deafness.If you are experiencing any issues discussed in this podcast, please contact your...
2025-09-2751 min
The Sunflower ConversationsDementia with Paul Hoskins and Tim Wilkins, Alzheimer's SocietyTim Wilkins from the Alzheimer's Society and Paul Hoskins join us to discuss dementia. The stigma and misconceptions around dementia often paint a bleak picture of life after diagnosis. Paul has a different story to tell as he is living with frontotemporal dementia and Alzheimer's. "Some days can be very hard. Some days are a lot easier," Paul explains, offering a glimpse into the reality of living with dementia. Far from withdrawing from life, Paul has embraced new activities since his diagnosis – from cricket and bowling to tapestry clubs and community involvement. His story challenges the noti...
2025-09-2140 min
The Sunflower ConversationsME / CFS with Hollie Christian Brookes, YawnThis episode was recorded on Instagram Live.Hollie Christian Brooks joined us to discuss her new play "Yawn: A Chronically Fatigued Play", which draws from her personal experience with ME/CFS to educate audiences about non-visible disabilities and create new connections with the community.We discuss everything, from symptoms and periods to self-discovery and the power of the Sunflower. ME/CFS often develops following viral infections like glandular fever, with Hollie’s diagnosis coming after years of recurring symptoms.The fatigue associated with ME/CFS differs from normal tiredness in that it cannot be alle...
2025-08-3141 min
The Sunflower ConversationsShort Bowel Syndrome, feeding tubes and ostomy bag with Shaylee Raye HunterJoin us as we welcome Shaylee Raye Hunter, Miss Petite Utah, who shares her journey as an advocate for women's rights and disability visibility. Shaylee opens up about her personal lived experiences with chronic intestinal pseudo-obstruction (CIPO), gastroparesis, and short bowel syndrome. In an open discussion, she shares how she manages her health conditions with medical interventions, such as a feeding tube and TPN, providing a unique glimpse into her life and the lifeline she depends on daily to receive the nutrients essential to life.We learn about the challenges Shaylee faced at school due to the...
2025-04-0942 min
The Sunflower ConversationsAutoimmune Diseases with Kate Middleton, The Wren Project - Podcasthon episodeKate Middleton, CEO of The Wren Project, joins us for a special edition as part of the Podcasthon, which seeks to spotlight thousands of charities.In this episode, Kate shares her personal journey with multiple autoimmune diseases and explains how the body attacks itself instead of viruses. The Wren Project pairs individuals with dedicated volunteers for up to six months of regular support. It provides vital mental health support through dedicated listening services to those living with these often non-invisible conditions, giving an essential lifeline to address and support feelings of isolation and loneliness.If...
2025-03-1635 min
The Sunflower ConversationsThe Empowerment Awards and Multiple Sclerosis with Elisha SamuelsIn this episode, we chat with Elisha Samuels, who recently won Hidden Disability Personality of the Year at The Empowerment Awards by Talks with MS. The award was sponsored by Hidden Disabilities Sunflower and presented by our podcast host, Chantal.Elisha shares her own unique experiences of living with multiple sclerosis, discussing her challenges, the importance of a supportive workplace, societal perceptions of living with a non-visible disability, and the Sunflower's value in making the invisible visible and its contribution to evoking dialogue about inclusivity and awareness.Elisha's poem, "Burnout" gives an insight to the...
2025-03-0919 min
The Sunflower ConversationsPTSD and CPTSD with Rachel Bilksi, PTSD UKOur 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.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 int...
2024-06-1656 min
The Sunflower ConversationsInflammatory Bowel Disease (IBD) with Amy Kelly, Crohn's & Colitis IrelandOur 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 s...
2024-05-201h 02
The Governors for Schools PodcastRepresenting every child - why experiences of neurodiversity and invisible disability matter on governing boardsIn this episode, we explore the importance of raising awareness of invisible disabilities and neurodiversity in schools, the impact this can have on children and young people, and the unique perspective neurodivergent people can bring to school governing boards.To discuss this topic, we’re joined by three passionate and knowledgeable voices - Chantal Boyle, Communications Manager at Hidden Disabilities Sunflower, Dr Claire Walsh, Chair of Governors (co-opted) and neurodiversity advocate, and Sue Blyth, Headteacher of Fourfields Community Primary School.Read a transcript of this conversation: https://bit.ly/3UFi0CnApply to be...
2024-05-1339 min
The Sunflower ConversationsPMDD with Anna Cooper and Dr Rebecca Tomlinson, Menstrual Health ProjectThis 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 fro...
2024-05-0149 min
The Sunflower ConversationsPMDD and Chemical Menopause with Amani OmejerCONTENT 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 s...
2024-04-2137 min
The Sunflower ConversationsParkinsons with Eve JenschEve 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...
2024-04-1444 min
The Sunflower ConversationsAutism and ADHD with Clare and Matilda KempClare 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.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...
2024-03-3149 min
The Sunflower ConversationsOptic Nerve Glioma with Michelle Culbert and Karina SmithOur 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...
2024-03-1739 min
The Sunflower ConversationsEating Disorders, Autism and ADHD with Adam FareCONTENT 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...
2024-03-0353 min
The Sunflower ConversationsLearning Disabilities with Dorothy Watson and Marcus Tanner, The Sunnybank TrustOur 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 b...
2024-02-2532 min
The Sunflower ConversationsEating Disorders with Zoe Summers, BEAT UKCONTENT 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 ea...
2024-02-1153 min
The Sunflower ConversationsStroke with Jo Aurora, Different Strokes, and Hayette WilkinsonJo 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.TF is face.A...
2024-01-2842 min
The Sunflower ConversationsStroke and Hayette WilkinsonThis 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 e...
2023-12-1729 min
The Sunflower ConversationsAutism and the Sunflower with William VanderpuyeWilliam Vanderpuye is a social worker and is autistic. In this conversation, William shares what the Sunflower means to him and the confidence and support it has given him while in education at university and now in employment.William's employer, Sutton Council, is supportive and offers understanding and kindness so that he can succeed and excel in supporting families with learning disabilities.This testimonial gets to the heart of what the Sunflower seeks to do, the people it aims to serve, and the community it seeks to improve.Please share this podcast to...
2023-12-1017 min
The Sunflower ConversationsPerimenopause and Menopause with Dr Louise NewsonDr Louise Newson is a GP & Menopause Specialist and joined us to share her knowledge and expertise. Dr Newson and her team at Newson Health are at the forefront of advocating for women to get the appropriate treatment to support their hormone health. As well as investing in research and training to help healthcare practitioners make the best decisions for their patients.We cover a wide range of questions, from perimenopause and menopause to how oestrogen, progesterone and testosterone impact the body and the importance of good hormone health to help prevent serious inflammatory disabilities later in...
2023-12-0351 min
The Sunflower ConversationsAutism with Maddie WhiteThis podcast was recorded as an Instagram Live.Maddie shared her lived experience of being wrongly diagnosed with mixed anxiety, depression and panic disorder before eventually being diagnosed with autism when at university aged 21. In our chat, we talked about her life as she tried to navigate the neurotypical world and her newfound approach to life since being diagnosed with ASD.Maddie explains how her sessions with a counsellor who was explicitly trained in ADHD and Autism brought the realisation that all along, her difficulties resulted from being overwhelmed, over-stimulated, and the need to know...
2023-10-2935 min
The Sunflower ConversationsPerimenopause and Menopause with Fay DurrantFay Durrant is a Wellbeing and Menopause coach and joined us to discuss perimenopause and menopause as well as her own lived experience with perimenopause.The conversation allows our hosts, Chantal and Paul, to speak about their experiences with having and living through perimenopause. Also discussed is the impact of this phase of life on relationships and work, as well as some of the hundreds of physical and mental symptoms.We finish with some self-care tips to support mental health, including mindfulness activities and breathwork.If you are experiencing any issues discussed in...
2023-10-1555 min
The Sunflower ConversationsRett Syndrome with Beth JohnssonBeth Johnsson joins us to talk about Rett Syndrome. This rare genetic disorder affects brain development, resulting in severe mental and physical disability.It's estimated to affect around 1 in 10,000 girls born yearly and is rarely seen in boys.Beth talks about her personal experience with her daughter, Hannah, who was diagnosed with the condition when she was very young. Hannah now has a complex list of disabilities, including epilepsy, scoliosis, apnoea, respiratory problems, and digestive problems. She's waiting for a gastrostomy. She might need spinal surgery. There are over 50 symptoms of Rett Syndrome, some of...
2023-10-0844 min
The Sunflower ConversationsMental Health with Sandy Kaur, SehhatSandy Kaur joins the Sunflower Conversations to discuss mental health and suicide prevention in Punjabi and South Asian communities and how her charity Sehhat is tackling the topic.We discuss the barriers to seeking support, including the obvious one, which is language and the cultural fear of judgment from the community.Whether talking about mental health or processing grief after suicide, Sandy explains how essential it is to provide access—starting by building trust and creating safe spaces to start those conversations.If you liked this podcast, please leave a review, subscribe an...
2023-09-2451 min
The Sunflower ConversationsMultiple Sclerosis with Lisa NiceLisa Nice has multiple sclerosis (MS). She joins Chantal and Paul to explain how the autoimmune and neurodegenerative condition affects her. We also discuss her employer, Comic Relief's approach to diversity, equity and inclusion.Diagnosed late in life, it came as a shock, and it took a while for Lisa to accept her diagnosis, which is relapsing-remitting. There are many symptoms of MS, and Lisa shares the ones she has, how she manages them, her treatment, and the adjustments she has had to make at work and in her social life.Footdrop – the in...
2023-09-1052 min
The Sunflower ConversationsHypertrophic Cardiomyopathy (HCM) with Bethany and Hannah KeimeOur guests are sisters Bethany and Hannah Keime, who have a condition called Hypertrophic cardiomyopathy (HCM), a disease of the heart muscle where the muscle wall of the heart becomes thickened.Bethany and Hannah received a diagnosis in high school and have had to make significant changes to their lives and sporting passions. They have both been fitted with an implantable defibrillator, which saved Hannah's life when she fell into cardiac arrest while asleep in bed.Together Bethany and Hannah have created a support charity called HEARTCHARGED to build a community for other young people...
2023-09-0358 min
The Sunflower ConversationsADHD, Processing Disorder and Depression with Ginger RagaishisGinger Ragaishis is Miss Vermont Teen 2023 and is currently a junior in high school. Ginger has ADHD and learning disabilities and uses her lived experience to deliver talks to younger students to give them the confidence to be their authentic selves while at the same time raising awareness about acceptance.We talk about how Ginger's processing disorder and ADHD have affected her educational experience and how essential the adjustments made by her school have been to allow her to excel academically.Ginger has experienced depression and discusses her triggers and how she advises young people...
2023-08-2741 min
The Sunflower ConversationsCerebral Palsy with Eva AbleyEva Abley joined Paul and Chantal at Disability Expo to share her life experience of living with cerebral palsy.Eva is 15 years old and a 2022 Britain’s Got Talent finalist who endeared the country when she took to the stage to entertain, amuse and delight with her quick-witted and observant humour and comedy routines.Close to Eva's heart is her work as a disability activist, and in this conversation, we talk about her lived experience of cerebral palsy, mental health, social exclusion and her activisit work.This is a live recording....
2023-08-1339 min
The Sunflower ConversationsFragile X Syndrome with Monique Mitchell and Liz Jewell, Fragile X Australia Liz Jewell is the Family Support Counsellor at Fragile X Australia, and Monique Mitchell is the mum of two children with Fragile X Syndrome. This conversation teaches us about Fragile X characteristics and the difference between boys and girls. We also include a Q&A from the Sunflower community, which is very insightful.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.For support and informationFragile X AustraliaFragile X UKHosted by Chantal Boyle, Hidden Disabilities Sunflower. Wa...
2023-08-0652 min
The Sunflower ConversationsBorderline Personality Disorder (BPD) and ADHD with Solène AnglaretSolène joined Ruth and Chantal at Disability Expo to share her life experiences of living with BPD and ADHD. It was a deep and meaningful conversation where Solène revealed the highs and lows, including how her therapy has given her the tools to accept and embrace her mental health and ADHD.This is a live recording.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.For support and informationBDP BunchMindBe Beyond BordersHosted by Chantal Boy...
2023-07-3050 min
The Sunflower ConversationsAutism with Patrick FopmaFor our first-ever face-to-face Sunflower Conversations recording, Chantal was joined by Patrick Fopma, who is autistic and who describes himself as having Aspergers. In our conversation, we discussed his differences, including how he wanted to fit in when he was at school. We cover his journey through education and the barriers he faced to gaining employment. Patrick offers some great advice to young autistic people but also to employers.This was a live recording, and as such, the sound isn't the best quality.If you are experiencing any issues discussed in this podcast please contact...
2023-07-1609 min
The Sunflower ConversationsBowel and Vaginal Cancer and Acoustic Neuroma with Karen BucknallKaren is a beauty pageant queen who joins the conversation to discuss her diagnosis, treatment and recovery.Karen shares intimate details of her health journey in a humorous and endearing way. After coming to terms with her post-surgery body, Karen enters beauty pageants to build her self-confidence and help support other women and raise cancer awareness.If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner. For supportMacmillanBowel Cancer UKColostomy UKHosted by Chantal Boyle, Hidden Disabilities Sunflower. Wa...
2023-07-0256 min
The Sunflower ConversationsDysautonomia with Miss Chile Ambar ZentenoAmbar Zenteno, Miss Chile, has dysautonomia and is shining her light on the condition through the beauty pageant Miss World - Beauty with a Purpose platform. Dysautonomia is a term used to describe any disorder of the autonomic (automatic) nervous system. Ambar advocates for the Hidden Disabilities Sunflower in Chile and plans to raise the profile of invisible disabilities and dysautonomia as she heads to compete in Miss World this year.If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.For support:...
2023-06-2530 min
The Sunflower ConversationsADHD, Developmental Coordination Disorder, and Sensory processing with Justin WesolekJustin has ADHD, Developmental Coordination Disorder, and Sensory processing issues. A graduate at the University of Wisconsin-Whitewater, in Wisconsin, which has a special focus for students with disabilities.Justin explains how each of his disabilities affects him and what accommodations his college has made so that the barriers to his education and work are removed.If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.Hosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hiddendisabilitiesstore.comM...
2023-06-1826 min
The Sunflower ConversationsSpecial Olympics World Games Berlin 2023 with Anna BallreichAnna Ballreich joins us from the Special Olympics World Games Berlin 2023 to explain the history of the games and what visitors can expect to see and experience.The Special Olympics is from the 17th – 25th June 2023. 7,000 Special Olympics athletes with intellectual disabilities from 190 delegations will compete in 26 sports. The athletes will be supported by more than 3,000 coaches and 20,000 volunteers.For support:Special Olympics World Games Berlin 2023 information and ticketsGet your Sunflower before you travel 🌻 Hosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email co...
2023-06-1122 min
The Sunflower ConversationsEpilepsy with Murray Goulder and Daniel Jennings, Epilepsy ActionMurray Goulder has epilepsy and joins us with Daniel Jennings from charity, Epilepsy Action, to talk about absence seizures, treatment, public misconceptions and access to venues.Murray campaigns for greater awareness of epilepsy using his lived experiences. An avid music lover, he regularly attends concerts and is passionate about ensuring access for all.If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.For support:Epilepsy Action and the Seizure First Aid videoCall Epilepsy Action 0808 800 5050 Hosted by Chantal Boyle, H...
2023-05-2834 min
The Sunflower ConversationsDisability Expo with Jade GodierJade Godier joins us to share exciting news about Disability Expo, a free person-focused event for people with lived experience of disability. Showcasing the latest developments on the disability market, relevant services and information, and a full programme of inclusive activities, performances and presentations from engaging relatable people. More informationDisability Expo information and free ticketsHosted by Chantal Boyle, Hidden Disabilities Sunflower. Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
2023-05-2424 min
The Sunflower ConversationsAbleVu and Meegan WintersMeegan Winters is the Hidden Disabilities Sunflower program regional partner in the US and co-founder of AbleVu and Able Eyes.Meegan talks about her life experiences and why she decided to create the AbleVu, - which provides a detailed preview of an organisation's accessibility features. Access virtual walk-through tours, accessibility checklists, and other details to ensure the location is accessible prior to visiting. More informationAbleVuHosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hiddendisabilitiesstore.comMusic by "The Emerald Ruby" Em...
2023-05-2126 min
The Sunflower ConversationsCongenital Anosmia and visual impairment with Claire-Louise PitmanClaire-Louise has Congenital Anosmia and is severely visually impaired. Since birth, Claire-Louise hasn't had a sense of smell, but only discovered this when she was 11 years old. We talk about how Claire-Louise navigates through life without two of her senses and what effect that has on her anxiety.If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.For support:Fifth SenseHosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hiddendisabilitiesstore.comM...
2023-05-0723 min
The Sunflower ConversationsPostural Tachycardia Syndrome (PoTS) with Jasmeet Kaur and Helen Eftekhari, PoTS UKHelen Eftekhari is a specialist nurse in Postural Tachycardia Syndrome (PoTS), and Jasmeet Kaur has lived experience of the health condition.Our conversation discovers what PoTS is and how it affects the body, including the impact it has physically and mentally on patients who can be left with chronic pain, fatigue and anxiety.Helen and Jasmeet share their joint knowledge to inform ways to care for and manage flare-ups, and advice on how others can support patients. They also respond to questions about PoTS from the Sunflower community.If you are experiencing any i...
2023-04-0956 min
The Sunflower ConversationsBrain injury with Holly Tyrer and Scott Casson-Rennie, Hidden Disabilities SunflowerWe are joined by colleagues Holly Tyrer, Hidden Disabilities Sunflower USA, and Scott Casson-Rennie Hidden Disabilities Sunflower Ireland. It is Holly’s 4th anniversary of her brain injury and Scott’s first anniversary of his Aneurysm.The brain is at the heart of our every action and thought, and so we talk about how their ABIs occurred, the effects that they have had on their lives, and their health journeys so far. If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.For support:
2023-03-261h 06
The Sunflower ConversationsME/CFS and Long Covid with Russell Fleming, ME AssociationRussell joins us from the ME Association to discuss Myalgic Encephalopathy and Chronic Fatigue Syndrome (ME/CFS), including what it is, and how it affects people.ME/CFS is a chronic, complex, multisystem disease that can produce a wide-range of disabling symptoms, dramatically impacting a person's ability to initiate or complete everyday tasks and to mobilise normally.We also talk about the similarities between ME and Long Covid. Russell shares his health journey with ME and his progress over the past 23 years. The conversation is full of insightful information for support and clinical...
2023-03-0546 min
The Sunflower ConversationsLupus with Paul Howard, Lupus UK and Rachel HallWe discuss the autoimmune disease Lupus, with Paul Howard, the CEO of Lupus UK. And Rachel Hall, who has lived experience of Lupus. Paul talks us through what the disease is and the symptoms to look out for and Rachel shares how Lupus has affected her, and the health journey she has been on. The conversation is packed with ways to support your career and where to turn to for support.Rachel has created an online group to offer support to other people with Lupus.If you are experiencing any issues d...
2023-01-2937 min
The Sunflower ConversationsFunctional Neurological Disorder (FND) with Dr Chris Symeon and Dawn Golder, FND Hope UK“Functional neurological disorder is a really common neurological condition. It happens because of a problem with brain signalling. So, it's involving brain networks rather than specific anatomical damage and it can affect any part of the nervous system.”Dr Chris Symeon, is a consultant neuropsychiatrist at St George’s University Hospital NHS Foundation Trust and the clinical lead for the FND rehabilitation programme. Dawn Golder, is a National Advocate of FND Hope UK and has lived experience with FND.In this conversation we get answers to the questions raised by Sunflower wearers about FND. Advice about...
2023-01-0842 min
The Sunflower ConversationsType 1 Diabetes with Emma Cathro“But you can end up in a coma if your sugar levels are too high because your body just can't function with so much sugar.”We are joined by Sunflower Friend - Emma Cathro. Emma has recently graduated with a First Class Honours in German and Sociology at the University of Aberdeen and is now a research associate. Emma has type 1 diabetes and shares her story of living life with the condition. We cover the main symptoms and what to look out for prior to getting a diagnosis. Emma explains her daily routine of how she e...
2022-12-1145 min
The Sunflower ConversationsCOPD with Dr Andrew Whittamore Asthma & Lung UK and Felicity PayneDr Andrew Whittamore of Asthma and Lung UK and Felicity Payne join us to talk about Chronic obstructive pulmonary disease, COPD which is the name for a group of lung conditions that cause breathing difficulties. Felicity has emphysema which comes under the umbrella of COPD, and explains how she has grown used to the condition, after initially finding herself feeling isolated with many unanswered questions. Felicity shares the activities she does to keep her lungs as strong and healthy as she can.Dr Andrew Whittamore provides us with a wealth of knowledge about the condition a...
2022-11-2045 min
The Sunflower ConversationsDyslexia and Dyspraxia with Dayna HalliwellDyslexia and Dyspraxia with Dayna HalliwellDayna is a digital content creator and actor and uses her lived experience of dyslexia and dyspraxia to raise awareness on her platforms of her learning difficulties. We talk through Dayna’s education experiences in primary school and university and the support that exists, but, also the needless and endless barriers to support from the Disabled Student Allowance, DSA.There are some great tips from Dayna on how to ‘take up space’ and not be apologetic for who you are. We talk about assistive technology including Natural Reader...
2022-11-1342 min
The Sunflower ConversationsSTAMMA with Kirsten Howells“…there are some people who are super comfortable stammering who won't looking for therapy or to change anything about their relationship with their stammering and the way that they talk. For those people who are looking to change that there's a range of support and therapy options, and speech and language therapy is one of those options.”Kirsten joins us on The Sunflower Conversations podcast to share with us her knowledge. Kirsten is the Programme Lead for Adults at STAMMA and is also a speech and language therapist with lived experience of stammering.The disruption to spe...
2022-10-3036 min
The Sunflower ConversationsNational Stuttering Association with Pam MertzPam joins us to give an insight to stuttering and the theme for International Stuttering Awareness Day which is Be Seen, Be Heard. The stereotypes associated with stuttering can often mean that a person that stutters is excluded, these barriers can affect self-worth.Be Seen, Be Heard seeks to challenge those stereotypes and encourage patience and acceptance to allow everyone to be their whole self. Pam explains that the neurodiverse condition isn’t a sign of intelligence but a disruption to how a person communicates, they know what they want to say but can experience a block or...
2022-10-2234 min
The Sunflower ConversationsMigraine with Steph Weatherley, The Migraine Trust and Katy BrownSteph Weatherley is the Information and Support advisor at The Migraine Trust, and has lived experience of migraines. We are also joined by Katy Brown. Katy is the CEO of her own company Magic Mountain and lives with chronic migraines.In this conversation we clear up the common myth about migraines not being simply headaches, it is a neurological condition. Katy shares with us how her daily migraines impact her life and the how she has set healthy boundaries to ensure that she is able to live her life to her full potential. Both Steph and Katy...
2022-10-1635 min
The Sunflower ConversationsBritish Dyslexia Association with Helen GoodsallBritish Dyslexia Association with Helen GoodsallHelen is the Knowledge & Information Manager at the British Dyslexia Association, an experienced workplace assessor and a parent of dyslexic children. She joins us to discuss the theme for Dyslexia Awareness week ‘Breaking through barriers’ which looks at how those living with dyslexia can overcome obstacles in their lives, this could be during education, work or general day-to-day living.1 in 10 of the population has dyslexia, a processing disorder, but with the right support and reasonable adjustments barriers to education and employment can be removed. The campaign seeks to reframe the...
2022-10-0229 min
The Sunflower ConversationsFASD with Jacob Casson-RennieFASD with Jacob Casson-RennieJacob is 16 years old and lives with his parents in Ireland, who head up FASD Ireland and Hidden Disabilities Sunflower Ireland. Jacob talks to us about living with Foetal Alcohol Spectrum Disorder, FASD. For Jacob auditory processing and memory is an issue and he explains how important it is that his peers and school are educated on the condition so that his additional needs can be understood and met. At school he has learning support staff who are crucial to his educational needs. And at his rugby club his coach has ad...
2022-09-1125 min
The Sunflower ConversationsAutism and ADHD with Jen HankinJen Hankin is a musician who composes, teaches and performs. Her creative skills extend to fine arts (digital and watercolour), photography, videography, fashion design and writing. Jen is also autistic and has ADHD.Jen has created a new piece of music called 'The End of Torpor', about coming out of a period of burnout related to her neurodiversity.This conversation focuses on Jen's education and how she uses her experiences to teach music to young neurodiverse students.To follow Emerald Ruby and find out more, use the links below:The Emerald...
2022-08-2838 min
The Sunflower ConversationsCystic Fibrosis and Ableism with Izzie Jani-FriendIzzie is a journalist and is using her lived experience as a young woman with cystic fibrosis to combat ableism through her writing. In this conversation we discuss how her chronic health condition, cystic fibrosis affects her daily life and how she manages her healthcare routine with work.Then we move on to what ableism is, the subtleties of it as well as the directness and where it can occur, such as on public transport and in the workplace. Izzie shares with us her ideas around how to eradicate it from society.For...
2022-07-2434 min
The Sunflower ConversationsObsessive Compulsive Disorder and mental health with Chloe FrancisChloe Francis has a range of health conditions including Obsessive Compulsive Disorder and Tourettes syndrome/Tic disorder, Sensory processing disorder, Vestibular processing disorder and Hypermobility, Anxiety disorder and Sleep disorder.In this conversation we discuss what OCD really is and what it feels like to have compulsions, we also discuss panic attacks and the affect that they have on a person. Chloe talks us through her early education and the support that she received from her classmates, through to her current job at the BBC.Chloe has some great advice on how to support a...
2022-07-0432 min
The Sunflower ConversationsBowel and lung cancer, stoma and dialysis with Gemma SavoryGemma had a missed early diagnosis of bowel cancer because the doctor believed her to be too young to have cancer at the age of 30. In the past 8 years she has undergone many operations and treatments and is now stage 4 NED. Gemma is very open about the procedures she has had and wants to use her platform to raise awareness of bowel cancer in young people and also provide a support network to people who are living with cancer. In this conversation we cover how important it is to fight for yourself when you believe that...
2022-07-0328 min
The Sunflower ConversationsTourette Syndrome and Brazilian Jui Jitsu with Khovan HusseinTourette Syndrome and Brazilian Jui Jitsu with Khovan Hussein“With my Tourette's, sometimes my verbal tics can be stuff like swearing, or I might say something that's offensive, but obviously I can't help it. So when I wear the badge outside, it makes me comfortable knowing that... It just shows everyone that I can't help it.”Khovan and his mum Shireen join us to celebrate Khovan’s achievement in being awarded with The Rotary Young Citizen Sporting Hero Award. Khovan is autistic, has Tourette Syndrome as well as ADHD.As a child...
2022-06-1222 min
The Sunflower ConversationsRegistered blind with Claire SiskRegistered blind with Claire SiskClaire had two strokes aged 29 after which she developed retinal dystrophy and is now registered blind. Following her strokes Claire has had to learn how to navigate in a sighted world and uses her Instagram account CanSeeCantSee to raise awareness of what daily life is like with sight loss and offer support and advice. Her work has recently been acknowledged with Best Social Media Impact of the Year award from RNIB as well as appearing on TV show Steph’s Packed Lunch .Claire explains what it was like to...
2022-06-0538 min
The Sunflower ConversationsTourette Syndrome and Autism with Martin MoxnessTourette Syndrome and Autism with Martin MoxnessMartin Moxness lives in Denmark and has many talents including being a successful Instagram a_different_spectrum and Tik Tok a_different_spectrum influencer, along with being creatively gifted in music and photography. Martin is autistic and uses his platform to raise awareness of his health conditions which include Tourette syndrome and ADHD.Martin explains that he has mental tics, intrusive throughs, OCD, as well as a range of verbal tics and how they form in his mind.During the conversation we discuss how the p...
2022-05-2229 min
The Sunflower ConversationsCochlear implant with Steven Mifsud MBESteven Mifsud, MBE, is profoundly deaf and joined us on the Sunflower Conversations to talk about his cochlear implant. This small, complex electronic device helps provide a sense of sound that enables him to hear.Steven explains the difference between a world of silence and non-stop sound. Since his first hearing aid aged two, technological advances have come a long way, and the sounds he can now hear are vastly improved. We talk about the social and medical models of disability, how they differ, and how they impact the deaf community. Steven’s decision to hav...
2022-05-0843 min
The Sunflower ConversationsTravel series – In the air with Shannon Wandmaker“And I saw that British Airways most recently became involved in the Sunflower program. And that to me makes a lot of sense”Shannon is an aviation specialist and joins us from Brisbane Australia to share his expertise and insights along with helpful tips for people with disabilities who wish to travel.Sitting on the Queensland Accessible Transport Advisory Council Shannon has a wealth of knowledge and we discuss problem solving, design and how in his opinion the Sunflower is the essential travel companion. Hosted by Chantal Boyle and Sandee Facy, Hidden Disabilities Sunfl...
2022-04-2424 min
The Sunflower ConversationsFoetal Alcohol Spectrum Disorder, FASD with Tristan Casson-Rennie and Jan GriffinFoetal Alcohol Spectrum Disorder, FASD with Tristan Casson-Rennie and Jan GriffinTristan is the founder of FASD Ireland, a not-for-profit charity that aims to raise awareness and provide support to families in Ireland living with FASD. And Jan is birth mum to Rossi who was born with FASD.They are both passionate about raising awareness of the dangers of drinking alcohol during pregnancy and removing the stigma associated with FASD in order that the families can seek the correct support. Jan didn’t realise that she was pregnant for 4 months, during which she con...
2022-04-1742 min
The Sunflower ConversationsAutism diagnosis with Bec StreetAutism diagnosis with Bec StreetBec works for charity Autism Spectrum Australia, as a Sunflower Advocate and is based in Sydney Australia. Since joining the charity 7 months ago Bec has discovered that she has many traits that sit on the autistic spectrum.In the conversation Bec explains how she felt as a child growing up and her previous employment experiences where adjustments weren’t made for her neurodiversity.Now that Bec is working in an inclusive environment it has made the world of difference to her working life. Being able to be he...
2022-04-1026 min
The Sunflower ConversationsLong COVID and autism with Linda DaltonLong COVID and autism with Linda DaltonLinda contracted COVID in 2020 and has been left battling the effects of Long COVID, the healthcare service and the Government in Ireland ever since.Once a great lover of the outdoors and fitness she now struggles with daily simple tasks such as answering the front door due to chronic fatigue. The brain fog that she experiences means concentrating on TV programmes, remembering what items she’s looking for when shopping are severely hindered.Linda is campaigning and raising awareness of Long COVID to be recognized by...
2022-04-0333 min
The Sunflower ConversationsMénière's disease with Lorna ThomasMeniere’s disease with Lorna ThomasLorna Thomas is a musician and has Meniere’s disease which is a long term, progressive condition affecting the balance and hearing parts of the inner ear. Symptoms are acute attacks of vertigo (severe dizziness), fluctuating tinnitus, increasing deafness, and a feeling of pressure in the ear.During the conversation Lorna explains how her Meniere’s has increased in severity over the past 20 years, including hearing loss and drop attacks. We also discuss what treatment options she has looked at.She is hopeful that surgery called Endoly...
2022-03-2731 min
The Sunflower ConversationsKidney Disease with Ayesha EdmondsonKidney Disease with Ayesha EdmondsonAyesha is a Peer Educator for Kidney Research UK, and she advocates for kidney donors from minority ethnic groups. After experiencing preeclampsia during the pregnancy of her first son Ayesha was diagnosed with Focal Segmental Glomerulosclerosis, FSGS.She explains what a crucial organ the kidney is for the human body and the functions it performs, as well as symptoms to watch out for. Ayesha is passionate about helping to educate people about kidney disease and is encouraging patients to sign up for the research programme being run by...
2022-03-2029 min
The Sunflower ConversationsEndometriosis with Gemma and AimeeEndometriosis with Gemma Beswick and Aimee GillGemma is a Volunteer Leader for the charity Endometriosis UK. Because of her lived experience of endometriosis she is passionate about supporting people who are waiting for a diagnosis and joins us to answer our questions.Aimee is a Sunflower wearer, who is now 18 years old but first started experiencing symptoms when she was 11, at 14 she received her diagnosis. Aimee has had numerous surgical and drug treatments. In the conversation they explain the physical effects of endometriosis and the emotional trauma they experienced at n...
2022-03-1340 min
The Sunflower ConversationsMarc Powell, RNIB talks about NaviLens and Kellogg'sMarc Powell, RNIB talks about NaviLens and Kellogg'sIf you have a visual impairment how do you know what you are buying, whether it is suitable for your needs, does it contain nuts or other allergens?These are only some of the questions that are never answered for blind and partially sighted people.NaviLens technology is changing the landscape of communication and giving people with visual impairments equity to be able to make informed decisions on their purchases.Marc explains how the technology works with the simple use of an...
2022-03-0612 min
The Sunflower ConversationsCrohns’ disease and Takayasu's with Artie CardenCrohns’ disease and Takayasu's with Artie CardenWe caught up with Artie who joined us in a Sunflower Conversation back 2020. Artie has hypermobility syndrome, Crohn’s disease and Takayasu's arteritis. After extended bouts of sickness and diarrhoea Artie sought a medical diagnosis, unfortunately it was this was a misdiagnosis of irritable bowel syndrome which was later changed to a Crohn’s.Artie’s conditions are autoimmune and result in inflammation across the entire body which can be extremely painful. Artie is on a combination of medications and spends a lot of time researching so that...
2022-02-2714 min
The Sunflower ConversationsEpilepsy and surgery with Hannah WilsonEpilepsy and surgery with Hannah Wilson Hannah has focal impaired awareness seizures and since we last spoke, 12 months ago, they have got progressively worse. Increasing in frequency and duration. They have also become tonic clonic.The seizures leave Hannah, bruised, sore and emotionally and physically wiped out. Because of this Hannah has been undergoing to tests which have revealed that she has refractory epilepsy which means that she is drug resistant. There is an opportunity for Hannah to undergo brain surgery, which while is scary she sees it as a golden opportunity to be...
2022-02-1319 min
The Sunflower ConversationsCerebral palsy, learning difficulties, and anxiety with Bryony MossCerebral palsy, learning difficulties, and anxiety with Bryony MossBryony 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 w...
2022-02-0621 min
The Sunflower ConversationsDyspraxia, dyslexia and dyscalculia with Fire Phoenix RisingDyspraxia, 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 dy...
2022-01-2322 min
The Sunflower ConversationsDesmoid tumour with MaryBeth EilerDesmoid tumour with MaryBeth EilerMaryBeth 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 w...
2021-12-1210 min
The Sunflower ConversationsVascular Ehlers Danlos Syndrome with Erica BaldwinThe Sunflower Conversations podcast - Vascular Ehlers Danlos Syndrome with Erica BaldwinErica 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.
2021-12-0509 min
The Sunflower ConversationsBowel cancer, LARS syndrome and stoma with Amanda StrotherBowel cancer, LARS syndrome and stoma with Amanda StrotherAmanda 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...
2021-11-2822 min
The Sunflower ConversationsPost Concussion Syndrome and Holly TyrerPost-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.
2021-11-2112 min
The Sunflower ConversationsPTSD with Danielle AllenSuddenly 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 supportCharity:PTSD UK
2021-11-1407 min
The Sunflower ConversationsRadiation caused my hidden disability with Kellie La FollettRadiation caused my hidden disability with Kellie La FollettKellie 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 b...
2021-11-0716 min
The Sunflower ConversationsFibromyalgia with Sue McIntoshOn 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 a...
2021-10-3111 min
The Sunflower ConversationsOn the Road series - Older Drivers ForumOlder Drivers ForumA national forum made up of a group of organisations that support the older motorist to drive safely for longer. They welcome drivers via their website to be informed and be kept up to date with the latest motoring advice.Aiming to reduce the number of deaths on the road, they offer superb advice to the older motorist. Their most recent campaign covered eyesight, renewing your licence, dementia, dash cams, electric vehicles and more.We hear about Driver Refresher courses, which are highly recommended to brush up on skills...
2021-10-2425 min
The Sunflower ConversationsNarcolepsy Cataplexy Dyslexia with Marcus Morgan-ValentineLet’s talk about intersectional support with Marcus Morgan-ValentineMarcus Morgan-Valentine has dyslexia, narcolepsy, cataplexy, osteomalacia, chronic costocondritus, dyslexia and IBS . He is a youth worker, and performer, and is passionate about advocating for people that have hidden disabilities.At the age of 11 he was involved in a car accident and that was when the symptoms of narcolepsy started but he didn’t receive his diagnosis until adulthood.Our conversation covers the challenges of work, disability and race discrimination and how difficult it is to apply for PIP...
2021-09-2628 minThe Sunflower ConversationsEhler Danlos Syndrome with Mik LenthEhler Danlos Syndrome with Mik LenthMik Lenth is 19 and lives in the MidWest in the US and has Ehlers Danlos Syndrome (EDS) which affects her connective tissue. The type that Mik has is hypermobility which means that her joints come out of place and dislocate.Mik talks us through her condition and how it has affected her growing up, particularly at school and how it continued into employment. The symptoms have progressively got worse and has led to several operations on her jaw and knee.With a good support system...
2021-08-0819 minThe Sunflower ConversationsSupporting families with additional needsSupporting families with additional needs Benedict Symcox is CEO of charity, Family Voice Surrey, which is a parent carer forum.We learn how they engage with parents of children with additional needs, of which there are over 30,000 families in Surrey. They use the lived experiences of real people to help inform the council's policy making and services.By listening to parents and carers they are able to create mini communities for them to feel supported, as well as offering training.Organisations discussed in this podcast:Family Voice Surrey F...
2021-08-0114 minThe Sunflower ConversationsNeurodivergent and Tourette Syndrome with Kez SymcoxNeurodiverse and Tourette Syndrome Kez Symcox is neurodiverse, and has comorbidities, including: autism spectrum disorder, Tourette Syndrome, generalised anxiety disorder, depression, an eating disorder, PTSD traits, chronic fatigue syndrome, functional neurological disorder, and is awaiting an ADHD assessment.We chat to Kez and her mum, Benedicte, to find out what their normal is. After many years of seeking medical advice and support what becomes clear is how mentally and physically demanding it is for Kez's parents. There always seems to be a battle to get the correct diagnosis which has had it's own impacts on...
2021-07-2518 minThe Sunflower ConversationsAphasia and Epilepsy with Tom RyanAphasia and Epilepsy with Tom RyanTom Ryan-Elliott has epilepsy and aphasia because of a brain injury he received while on holiday in Las Vegas. He has no recollection of the accident and has had several years of rehabilitation. His epilepsy gives him Simple Focal and Atonic Clonic seizures, and the aphasia affects his speech and language processing. Over time he has developed coping strategies and with the use of technology he is on a mission to re-enter the world of employment.Now a keen photographer Tom’s moto is ‘never give...
2021-07-1124 min