Show cover of The Sunflower Conversations

The Sunflower Conversations

The Sunflower Conversations deliver a deeper understanding of the Sunflower's role in supporting people with hidden disabilities. The topics are often personal and explore hidden disabilities through the prism of the Sunflower with guests hosted by members of the HIdden Disabilities Sunflower team. Making the invisible, visible.

Tracks

FASD with Jacob Casson-Rennie
FASD 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 adapted his methods so that Jacob is better able to cope with the fast-paced game and make a real contribution to team.As well as supporting his parents with their vital work in raising awareness of FASD and invisible disabilities, Jacob also expresses how he uses his determination as a positive force and talks about his aspirations.When planning to have a baby, both parents should stop drinking to avoid any chance of the baby having FASD.If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.For supportFASD IrelandNational FASD UK FASD Hub Scotland Dr Raja Mukherjee Hosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.com 
25:10 09/11/2022
Autism and ADHD with Jen Hankin
Jen 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' which is about coming out of a period of burn out which relates 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 Ruby Tiktok Emerald Ruby Bandcamp Emerald Ruby Spotify YoutubeFacebookEmerald Ruby InstagramThe End of Torpor for Flute and Cello Live VideoHosted by Chantal Boyle and Sandee Facy Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit Hidden Disabilities Sunflower UK or Hidden Disabilities Sunflower Australia 
38:30 08/28/2022
Ableism and Cystic Fibrosis with Izzie Jani-Friend
Izzie 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 supportIf you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner. Cystic Fibrosis TrustHosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.com Visit Hidden Disabilities Sunflower 
34:34 07/24/2022
Obsessive Compulsive Disorder and mental health with Chloe Francis
Chloe 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 friend, family, or colleague who is experiencing challenges with their mental health.For supportIf you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.OCD UKOCD ActionHosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit Hidden Disabilities Sunflower
32:03 07/04/2022
Bowel and lung cancer, stoma and dialysis with Gemma Savory
Gemma 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 something isn't right with your body. Also discussed are the affects of surgery and chemotherapy, and the symptoms of bowel cancer to look out for - it is very important to seek a diagnosis as early as you can.  This was recorded 2 weeks prior to Deborah James, BowelBabe, sadly passing away. For supportIf you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.Bladder & BowelBowel Cancer UKHosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit Hidden Disabilities Sunflower 
28:59 07/03/2022
Tourette Syndrome and Brazilian Jui Jitsu with Khovan Hussein
Tourette 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 he struggled with communication and social interaction, but since joining a Brazilian Jui Jitsu club it has been the key to his communication skills and participation, providing him with a sense of community, development and growth.Khovan explains how the martial art answers his sensory needs and how he is committed to raising money for charities, and supporting other young people and their parents through his Tik Tok account @KhovanH where he posts videos and answers questions. For supportIf you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.Tourettes ActionKhovan’s TikTok  @KhovanH Khovan’s Instagram @KhovanhnKhovan and his sisters Just Giving page for Tourette’s Action - Move for Tourette’s (ends 15th June)  Hosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit Hidden Disabilities Sunflower 
22:46 06/12/2022
Registered blind with Claire Sisk
Registered 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 slowly lose her sight and what adjustments she has made at home to continue to run the house and do all the chores she previously did. We also discuss accessible make up as well as the perceived barriers to employment.For supportIf you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.RNIBClaire's Instagram account CanSeeCantSeeHosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit Hidden Disabilities Sunflower
38:55 06/05/2022
Tourette Syndrome and Autism with Martin Moxness
Tourette 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 publics perceptions and prejudices have a damaging consequence, leading to supressing tics which causes exhaustion both physically and mentally. What we take from this podcast is the importance to normalise Tourette Syndrome, including tics and stimming, to foster acceptance and understanding. For supportIf you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.Tourette Action Tourette support around the world Martin's Instagram a_different_spectrumMartin's Tik Tok a_different_spectrumHosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit Hidden Disabilities Sunflower 
29:34 05/22/2022
Cochlear implant with Steven Mifsud MBE
Steven Mifsud MBE, is profoundly deaf and joined us on the Sunflower Conversations to talk about his cochlear implant, which is a small, complex electronic device that helps provide a sense of sound which enables him to hear.Steven explains what the difference is like between a world of silence and non-stop sound. Since his first hearing aid aged 2 technological advances have come a long way, and the sounds that he is now able to hear are vastly improved. We talk about the social and medical model of disability and how they differ, and how they impact the deaf community. Steven’s decision to have cochlear implant impacted on some of his friendships because for many deaf people the medical model of disability is wrong.For supportIf you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.British Deaf Association (BDA) Royal National Institute for Deaf People (RNID)  Hosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit Hidden Disabilities Sunflower
43:16 05/08/2022
Travel 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 Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit Hidden Disabilities Sunflower  
24:26 04/24/2022
Foetal Alcohol Spectrum Disorder, FASD with Tristan Casson-Rennie and Jan Griffin
Foetal 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 consumed alcohol. It is important to point out that Jan doesn’t have an alcohol addiction and that once aware of the pregnancy she stopped, however there was never any guidance from her doctor to tell her do so.Tristan also has lived experience with his adopted son who has FASD and is campaigning in Ireland for the condition to be recognised as a disability to support the hundreds of babies born every year to parents who unwittingly don’t realise the harm that alcohol can have on a foetuses brain’s neurological pathways.This conversation is full of tips for parents, families and carers to use.When planning to have a baby, you and your partner should stop drinking to avoid any chance of the baby having FASD.For supportFASD IrelandNational FASD UK FASD Hub Scotland Dr Raja Mukherjee Hosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit Hidden Disabilities Sunflower  
42:15 04/17/2022
Autism diagnosis with Bec Street
Autism 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 her authentic self means that she doesn’t feel as though she must mask and can approach her role fully focused on the job in hand. It also means that she is using less of her energy reserves.We talk about meeting in the middle and all things neurodiverse!If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.For supportAutism Spectrum Australia National Autistic Society, UK Hosted by Chantal Boyle and Sandee Facy, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comHidden Disabilities Sunflower  
26:37 04/10/2022
Long COVID and autism with Linda Dalton
Long 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 the Government and healthcare service in Ireland. In this conversation she explains the research that she has discovered.The conversation also covers both her and her daughter’s recent autism diagnosis and how empowered she feels as a result. Linda now understands her behaviours and how she interacts with the world.If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.For supportNHS COVID Recovery Long Covid Ireland Support GroupGez Medinger YouTube Channel  Hosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.com
33:15 04/03/2022
Ménière's disease with Lorna Thomas
Meniere’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 Endolymphatic Sac Decompression will bring an end to the condition. If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.For supportThe Ménière’s Society charity Facebook support groupsMenieres Disease UKMenieres Disease Support Group *UK Only* The Meniere's SocietyUSA Meniere's Disease Support Group  Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.com
31:32 03/27/2022
Kidney Disease with Ayesha Edmondson
Kidney 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 Kidney Research UK.24 years after her initial diagnosis Ayesha is at Stage 4 of kidney disease and is campaigning for a living donor. If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.For supportKidney Research UK Find out more about becoming a living Kidney donor Check out Ayesha’s Instagram account Start the Conversation  Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.com    
29:03 03/20/2022
Endometriosis with Gemma and Aimee
Endometriosis with Gemma Beswick and Aimee GillEndometriosis can affect anyone assigned female at birth, including women, trans men, non-binary and intersex individuals.Gemma 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 not being believed, having to fight for the correct diagnosis and friends falling away.If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.For supportEndometriosis UK Check out Aimee’s Instagram account Endo FighterCheck out the Fife Group Endometriosis Facebook pageEndometriosis FifeInvisible Disabilities IndexEndometriosis Hosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.com    
40:39 03/13/2022
Marc Powell, RNIB talks about NaviLens and Kellogg's
Marc 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 app and a smart phone. We also hear about future aspirations beyond Kellogg's and UK, so that the 2 million people in the UK and the 20 million people in Europe with visual impairments can navigate, shop and cook with confidence.Find out moreNaviLensRNIBHosted by Chantal Boyle, Hidden Disabilities SunflowerWant to share your story? email conversations@hiddendisabilitiesstore.com
12:40 03/06/2022
Crohns’ disease and Takayasu's with Artie Carden
Crohns’ 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 when visiting the doctors is already armed with the information to support the treatment plan.If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.For supportCrohn’s and Colitis  Check out Artie's social media pagesYouTube.com/c/ArtieCarden Twitter.com/ArtieCarden Instagram.com/ArtieCarden Artiecarden.comFacebook.com/ArtieCarden  Watch and listen to Artie’s first Sunflower Conversation with us. Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.com
14:17 02/27/2022
Acquired brain injury with Brooke Simon
Acquired brain injury with Brooke SimonTRIGGER WARNING, in this podcast we discuss domestic violence.Brooke acquired her brain injury at the hands of persistent domestic violence. The trauma she experienced resulted in her losing her sight in one eye, and partially blind in other. She is also partially deaf and uses hearing aids, additionally her mobility has been affected.Overcoming the extensive physical and psychological injuries she endured, Brooke runs her own business and since her rehabilitation she has had to develop coping strategies to deal with her severe memory loss. If you are worried about someone, look out for signs that their behaviour has altered, how they interact with people around them and their appearance.  If you are experiencing problems discussed in this podcast contact the following organisations for support:Australia - Women's Community Shelters Domestic Violence Counselling Line: 1800 737 732UK – Refuge Helpline: 0808 2000 247USA – Domestic Shelters  Hosted by Paul Shriever, Hidden Disabilities Sunflower.   Want to share your story? email conversations@hiddendisabilitiesstore.com  
17:24 02/20/2022
Epilepsy and surgery with Hannah Wilson
Epilepsy 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 seizure free.Hannah works at Asda, but her passion is her volunteer role with St John’s Ambulance.“I will fight to the very end to be seizure-free.” If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.For supportEpilepsy SocietyListen to Hannah’s first Sunflower Conversation with us. Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.   Want to share your story? email conversations@hiddendisabilitiesstore.com 
19:51 02/13/2022
Cerebral palsy, learning difficulties, and anxiety with Bryony Moss
Cerebral 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 woman who has a passion for animals and performing arts.Bryony’s adoptive parents provide her with love, stability and the support that she needs along with a support worker who accompanies her so that she can live an independent life.Bryony explains how attitudes towards disability need to change - and for everyone to realise that disability isn’t t scary. If you are experiencing any of the issues discussed in this podcast contact your GP.For supportSamaritans or call 116 123 Childline or call 0800 1111 CP Teens Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.     Want to share your story? email conversations@hiddendisabilitiesstore.com
21:17 02/06/2022
Dyspraxia, dyslexia and dyscalculia with Fire Phoenix Rising
Dyspraxia, dyslexia and dyscalculia with Fire Phoenix Rising Fire Phoenix Rising  is a poet and has dyspraxia, dyslexia and dyscalculia – or the triple D’s as she affectionately refers to them.The dyspraxia went undiagnosed during her formative primary school years until her mum read an article about a dyspraxic child and recognised the similarities. Fire Phoenix Rising finds that she has no filter and has difficulty picking up social cues making it difficult to forge friendships.  Her coordination is also affected which presents as being clumsy.Aged 19 she was diagnosed with dyslexia and dyscalculia is still to receive a formal diagnosis. Fire Phoenix Rising found writing poetry allowed her to express her emotions but at the time had no idea how talented she was. She has won competitions and received funding to film and record her work. Fire Phoenix Rising is very busy and is passionate about shining a light on disability, homelessness and women’s equality. We are delighted that Fire Phoenix Rising is one of the judge’s for the Hidden Disabilities Sunflower 2022 poetry competition Getting around - invisible disabilities and me.If you are experiencing any of the issues discussed in this podcast contact your GP.Organisations that offering supportShelter Odd Arts Women’s Voices Movement Poison Apple TheatreBack on Track Changing Futures Hosted by Chantal Boyle, Hidden Disabilities Sunflower.     Want to share your story? email conversations@hiddendisabilitiesstore.com  
22:34 01/23/2022
Cerebral Palsy with Peta Hooke
The Sunflower Conversations – Cerebral Palsy with Peta HookePeta has cerebral palsy which affects her mobility. Peta uses a wheelchair as she cannot stand or walk independently, she also uses a hoist to shower.The cerebral palsy was caused at birth when she experienced a lack of oxygen for few seconds.At 12 Peta had an operation which went wrong and stretched her nerves too much resulting in chronic nerve pain. Extensive therapy was necessary to re-educate her brain to overcome the pain. Peta approaches life with determination, her outlook on life is positive and has led her to start her own business as a podcaster on her show called I Can’t Stand. As a Disabilities advocate her aim is to educate everyone about what it is like to have a disability, and remove the ‘pity tilt’ of the head.In Peta’s words “nothing is wrong, I am just being myself.”If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner. Further informationI Can’t Stand podcast Hosted by Paul Shriever, Hidden Disabilities Sunflower.    Want to share your story? email conversations@hiddendisabilitiesstore.com
19:53 01/09/2022
Desmoid tumour with MaryBeth Eiler
Desmoid 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 with their health.If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US.Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.com
10:21 12/12/2021
The Sunflower Conversations podcast - Vascular Ehlers Danlos Syndrome with Erica Baldwin
The 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.If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US. For supportEhlers Danlos Support UKEhlers Danlos Society USHosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.com
09:33 12/05/2021
Bowel cancer, LARS syndrome and stoma with Amanda Strother
Bowel 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 about how the stoma works, what it looks like, what she can do, and other people’s perceptions.Amanda is on a mission to educate and raise awareness of stomas. If you are experiencing problems discussed in this podcast contact your GP.For supportColostomy UK Hosted by Chantal Boyle, Hidden Disabilities Sunflower.   Want to share your story? email conversations@hiddendisabilitiesstore.com 
22:38 11/28/2021
Post Concussion Syndrome and Holly Tyrer
Post-Concussion Syndrome Holly Tyrer lives in Hollywood, California and had her dream job as a Script Supervisor.She was diagnosed with Post Concussion Syndrome (PCS) after an accident at work which resulted in a traumatic brain injury. Holly explains how it has altered every aspect of her life. She experiences sensitivity to light and sound, nausea and tremor and migraines. Her speech is also affected.Holly has been working very hard using different therapies to improve her conditions and rebuild her neuropathways with a hope to eventually return to work.If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US. For supportThe Brain Charity - UKBrain Injury Association of America  Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.  Want to share your story? email conversations@hiddendisabilitiesstore.com
12:46 11/21/2021
Suddenly hit by PTSD with Danielle Allen
Suddenly hit by PTSD with Danielle Allen Danielle Allen is a mum to three children. Her eldest son Louis was born with a congenital heart condition called Coarctation of the aorta.Suddenly six years later, and following the traumatic experience of Louis undergoing heart surgery  at 10 days old, Danielle experienced what she describes as a big black cloud which came from nowhere.  She describes the profound impact that had her and the subsequent diagnosis of Obsessive Anxiety Disorder and PTSD.  For supportCharity: PTSD The NHS advise that if you or your child are experiencing problems after a traumatic experience, or if the symptoms are particularly troublesome you should contact your GP.  Hosted by Chantal Boyle, Hidden Disabilities Sunflower.  Want to share your story? email conversations@hiddendisabilitiesstore.com  Visit the Hidden Disabilities Sunflower website.
07:42 11/14/2021
Radiation caused my hidden disability with Kellie La Follett
Radiation 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 bringing people together, as well as being a keen advocate for the Hidden Disabilities Sunflower in the US.Find out more about Kellie La Follett Hosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit the Hidden Disabilities Sunflower website.
16:33 11/07/2021
On the Road series - Living with Fibromyalgia with Sue McIntosh
On the Road series - Living with Fibromyalgia  Sue McIntosh developed fibromyalgia after being involved in a traffic collision. No longer able to continue her career as an advanced driver in the Police force, she has since learnt how to self manage her symptoms and daily activities, such as driving, shopping and working.Mindfulness has been hugely beneficial to Sue, as has a change of career into photography as she can fit it around her disability.Driving now has its limitations, here Sue explains why On the Road with the National Highways and the Sunflower is a good idea.If you are experiencing problems discussed in this podcast contact your GP.For supportFibromyalgia Action UKOrder a free On the Road with the National Highways Sunflower car stickerContactSue McIntosh Photography on Instagram @suemcintoshphotographyHosted by Chantal Boyle, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit the Hidden Disabilities Sunflower website.
11:25 10/31/2021