Everyday People Talking Health
By Silent Elephant Project
Everyday People Talking HealthOct 27, 2021
55. Getting To Know ME - Chapter 22 (It’s Like Pulling A Handbrake)
Anna Savory is a creative, writer, comic, and business programme lead at the British Library. She was diagnosed with ME/CFS after battling with the effects of Covid-19 vaccine jab. Anna shades light on her diagnosis journey, support systems and her inspirations in implementing change for individuals with disabilities.
Over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men. [nice.org.uk]
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experiences and hear from specialists on their experiences treating this condition.
Links and more info:
- ME association
- Action for ME
- #ME Action
- Article on rare link - https://www.science.org/content/article/rare-link-between-coronavirus-vaccines-and-long-covid-illness-starts-gain-acceptance
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you @Freshrbcic and @Emp_Health or stay in touch via email- admin@silentelephantproject.org
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants challenge. This phrase has coined the main objective of the SEP.For more info - https://www.freshrb.com/silentelephantproject
54. Chronic Migraines: A Constant Fire Alarm
Rosie has struggled with Chronic Migraines from her teenage years. She uses her lived experiences of health to champion for others living with disabilities. She hopes to make arts and galleries accessible whilst raising awareness of health through her creative works.
Chronic migraine is a debilitating and disabling condition that affects around 2 in 100 people [TheMigrainTrust]
Connect and check out Rosie's works:
- Instagram @_ _ rosie.art
- ‘Self, sense, space’ - collaborative creative project.
- The Advent Project - bookbinding tutorial.
More info:
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you @Freshrbcic and @Emp_Health or stay in touch via email- admin@silentelephantproject.org
What is SEP? Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants challenge. This phrase has coined the main objective of the SEP. For more info - https://www.freshrb.com/silentelephantproject
53. Getting To Know ME - Chapter 21 (Surviving Winter)
Kondwani reflects on impact of the winter season whilst coping with ME/CFS and fibromyalgia symptoms. He also shares a few thoughts from others with similar experiences.
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experiences and hear from specialists/charities on their experiences dealing with this condition.
Links to access support::
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you @Freshrbcic or @Emp_Health or stay in touch via email- admin@silentelephantproject.org
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants challenge. This phrase has coined the main objective of the SEP.
For more info - https://www.freshrb.com/silentelephantproject
52. Reflecting on 2023 & Health Stories
Amazing how time flies, filled with experiences and new connections with people we meet on our journey of life. As we wind down closing the year in this festive season, I hope I’m not alone in recounting events and milestones over the past months. At this moment being in a reflective mode stands out for me.
Guests featured in these conversations have different experiences of health conditions, and yet their shared stories are filled with wisdom for anyone at any point in life to take inspiration.
Links to full podcast conversations:
- Kelvin - Sickle Cell
- Faith - Alopecia
- Letitia - Multiple Sclerosis (MS)
- Ellen - Arthrogryposis (AMC)
- Anna - Breast Cancer
- Dave - Dyslexia & ADHD
- Russell - ME Association (Russell’s personal story)
- Sonya - Action for ME
Links to ME/CFS charities:
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you @Freshrbcic or @Emp_Health or stay in touch via email- admin@silentelephantproject.org
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants challenge. This phrase has coined the main objective of the SEP.
For more info - https://www.freshrb.com/silentelephantproject
51. Finding My Resilience: Multiple Sclerosis
Letitia is a creative, music coach and social entrepreneur diagnosed with Multiple Sclerosis (MS). She shares impact of her diagnosis, accepting support and building resilience. We also discuss her passion for music and the amazing work at VoxPro Sessions
The UK has around 130,000 people living with MS. An estimated 2,500,000 people in the world have multiple sclerosis. [MS Trust]
More info & links:
- VoxPro Session Project - http://starter.voxprosessions.co.uk/
- Dietary Approaches to Treating Multiple Sclerosis-Related Fatigue
- Link between childhood trauma and neurological disease - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9586666/
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you @Freshrbcic or @Emp_Health or stay in touch via email- admin@silentelephantproject.org
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants challenge. This phrase has coined the main objective of the SEP.
For more info - https://www.freshrb.com/silentelephantproject
50. Embracing My Alopecia
In this episode, Ellen interviews Faith Hiles, a dancer and fitness coach who has both Alopecia Areata and Coeliac disease. They discuss Faith's journey with Alopeica and how it has affected her confidence over the years, her diagnosis of Coeliac disease, her passion for dancing and fitness, how she is raising awareness of her health conditions now, and her experience of dating and relationships.
Social media handles:
- Instagram @faith_hiles
- Facebook: Faith Hiles
- YouTube: Trust Faith
Alopecia Areata is an autoimmune condition which causes hair loss on the scalp, face and body areas. There are 160 million people worldwide who either currently have it, have had it in the past or will have it in the future.
Coeliac disease is an autoimmune condition which results in the body having an adverse reaction to gluten, which can result in malnourishment as the gut cannot absorb nutrients. About 1% of the global population have Coeliac disease, although there are a huge amount of people who have been misdiagnosed.
Links & info:
- Alopecia UK - https://www.alopecia.org.uk/alopecia-areata
- Alopecia around the world (NAAF) - https://www.naaf.org/alopecia-areata/#:~:text=Nearly%206.7%20million%20people%20in,some%20form%20of%20alopecia%20areata.
- NHS - https://www.nhs.uk/conditions/coeliac-disease/
- Coeliac UK - https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you @Freshrbcic or @Emp_Health or stay in touch via email- admin@silentelephantproject.org
What is SEP? Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants challenge. This phrase has coined the main objective of the SEP. For more info - https://www.freshrb.com/silentelephantproject
49. Seeking Support - Dyslexia & ADHD (Part 2)
Dave grew up not knowing he had Dyslexia & ADHD which was later diagnosed in his 40s. In this final part of our conversation on impact of growing up with Dyslexia and ADHD, we dive deep into Dave’s public health work in the community as he fights health inequalities. Dave also shades light on family, seeking support and managing work life.
(This podcast conversation is a 2-part episode, and this is part 2)
ADHD is a neurodevelopmental disorder which has features relating to both specific learning difficulties and mental health.
Dyslexia is a neurological difference and can have a significant impact during education, in the workplace and in everyday life.
Links & info:
- Map showing life expectancy - https://www.bbc.co.uk/news/uk-england-london-18917932
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you so do stay in touch on social media @Emp_Health or email us at admin@silentelephantproject.org
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants challenge. This phrase has coined the main objective of the SEP.
For more info - https://www.freshrb.com/silentelephantproject
48. Chaos in Class - Dyslexia & ADHD (Part 1)
Dave grew up not knowing he had Dyslexia & ADHD which was later diagnosed in his 40s. He recalls what life was like in school, experiences growing up, and the impact of not having early diagnosis.
(This podcast conversation is a 2-part episode, and this is part 1)
ADHD is a neurodevelopmental disorder which has features relating to both specific learning difficulties and mental health.
Dyslexia is a neurological difference and can have a significant impact during education, in the workplace and in everyday life.
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you so do stay in touch on social media @Emp_Health or email us at admin@silentelephantproject.org
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants challenge. This phrase has coined the main objective of the SEP.
For more info - https://www.freshrb.com/silentelephantproject
47. "Securing Change For The Future" - ACTION FOR M.E.
Today you will hear from Sonya Chowdhury (CEO at Action For ME) as we discuss Long Covid, ME/CFS, projects such as DecodeME Study and World ME Alliance.
Action for M.E. is the only charity in the UK supporting people with M.E. of all ages and their services have often been referred to as a 'lifeline' by those who have accessed them. They are working to ensure that adults, children, young people and families living with M.E. are supported during this unprecedented time, and beyond.
Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological disease that causes symptoms affecting many body systems, more commonly the nervous and immune systems. M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.[ActionForME]
Social handles:
Links:
- DecodeME Study – To take part in the world’s largest genetic study into ME/CFS or find out more: www.decodeme.org.uk
- Action for M.E. information, support, advocacy and healthcare services: https://www.actionforme.org.uk/get-support-now/help-and-support-for-you/how-can-our-services-help/ or call 0117 927 9551
- Action for M.E. Healthcare Services: https://www.actionforme.org.uk/get-support-now/our-healthcare-services/healthcare-services-for-me/
- Action for M.E. online peer support forums (one for adults and one for children and young people): https://www.actionforme.org.uk/our-community/
- Action for M.E. resources for people with ME, carers and professionals https://www.actionforme.org.uk/get-support-now/info-and-support-resources/living-with-me/
- Our recent FOI report: https://www.actionforme.org.uk/news/foi-report-highlights-shocking-lack-of-specialist-care/
- Action for M.E. – to donate or support our work: www.actionforme.org.uk
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you so do stay in touch on social media @Emp_Health or email us at admin@silentelephantproject.org
What is SEP? Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants challenge. This phrase has coined the main objective of the SEP. For more info & get touch - https://www.freshrb.com/silentelephantproject
46. Arthrogryposis: Being Creative… A Therapeutic Outlook
Ellen shares her life journey from dealing with Arthrogryposis (AMC) as a child to facing diagnoses such as Overactive Bladder and Incontinence issues as a young person. We discuss the importance of family support, dealing with work as a creative and podcast producer, fitness, mental health and staying positive.
Social media @ellenhmacleod (https://www.instagram.com/ellenhmacleod/)
Arthrogryposis incidence is 1 in 3,000 to 1 in 5,000 live births [isuog.org]. There are more than 300 conditions that come under the Arthrogryposis [arthrogryposis.co.uk].
We hope you enjoy this episode 😃
Do you have a health story to share? Or know someone who would be interested? - We hope to connect with you so do stay in touch on social media (@Emp_Health)
What is SEP? - Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - https://silentelephantproject.org/
45. Empathy + Health = Humanity
Empathy and health are central to being human. As we continue celebrating 10 years of Freshrb, we look forward to building engagement as we have these conversations around HEALTH and fostering further connections with you our community of listeners and supporters. We invite you to share your stories so others can find inspiration.
We hope to connect with you so do stay in touch on social media (@Emp_Health) and of course feel free to send us a message via our website at (freshrb.com)
44. “We're Here For You” - ME ASSOCIATION
The ME Association has been providing expert help since 1980. They understand the challenges faced by people with ME/CFS, PVFS, and Long Covid, and believe that nobody should struggle alone. They provide support and information, campaigns and invest in medical research. They're here for you!
Social media handles @meassociation on Twitter Instagram Facebook LinkedIn YouTube
The booklet is available here - https://meassociation.org.uk/product/what-we-do-and-why/
Links to additional information below:
- The NICE Guideline on ME/CFS
- The NICE Rapid Guideline on Long Covid
- Diagnosing ME/CFS
- Long Covid & ME/CFS: Are they the same?
- Employment Issues and ME/CFS
- Care and Support Plans
- Caring for a person with ME/CFS
- Energy Management and Pacing
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.For more info - http://www.silentelephantproject.org/
43. Getting To Know ME - Chapter 20 (Accepting & Surviving M.E)
Over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men. [nice.org.uk]
Russell has been living with Myalgic Encephalomyelitis (ME/CFS) over 20 years. He shares his diagnosis journey and how acceptance was key to surviving his ordeal. Russell enjoys going on walks and spending time with his dog Buster. You can read about Russell’s story - Surviving ME/CFS
We hope you enjoy this episode.
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experiences and hear from specialists on their experiences treating this condition.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
42. IT’S GONNA BE ALRIGHT
If both parents have the gene, there's a 1 in 4 chance of each child they have being born with sickle cell disease. [NHS UK]
Today’s episode is with Kelvin, a young man from London with an impressive attitude towards living life to the fullest. He was diagnosed with Sickle Cell at the young age of 5, and now at 25 years, he believes in keeping your mind at peace.
Social handles:
- twitter.com/kelvinamp_
- instagram.com/kelvinamp_
Books:
- https://www.amazon.co.uk/Truth-Behind-Filter-Empowering-Experiences-ebook/dp/B09VC6B7SR
- https://www.tgconsultingltd.co.uk/the-truth-behind-the-filter-authors
We hope you enjoy this episode
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - https://www.freshrb.com/silentelephantproject
41. Living Beyond Cancer
About 1 in 8 women are diagnosed with breast cancer during their lifetime. There's a good chance of recovery if it's detected at an early stage. [NHS UK]
Anna shares with us her Breast Cancer diagnosis journey and the amazing people in her life that helped her cope through the ordeal. Anna still finds time to dedicate her passion for nature and helping others achieve their potential. She is a true believer in living your life in harmony with thy self.
Checkout links to some of her projects:
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - https://www.freshrb.com/silentelephantproject
40. #PRETENDLESS
75% of deaths registered as suicide in England and Wales in 2019 were among men. [mind.org.uk]
John and Fidelis have a catch up after filming production of Pretend (a mini series exploring men's mental health). They share their experiences of dealing with mental health, how they found being on set and embodying characters for the screenplay.
Checkout the link to learn more and stay up to date or be involved in future developments of this mini-series 👉 https://linktr.ee/Pretendless
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
39. Commit To Your Vision
Javeno is passionate about creating an inclusive space for people in the community. He recalls one committed client named Brenda who's enthusiasm and love of the sessions helped spread the word which led to greater numbers of people participating. Javeno is committed to empowering individuals achieve greatness in health by providing access to tailored fitness sessions at J7 Health Centre in Higher Blackley, Manchester. In this episode, Javeno shares his life's journey, challenges faced during the pandemic lockdown and how he managed to stay committed to his vision.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
38. Men's Mental Health
Mental health problems are common, with 1 in 6 adults reporting a common mental health disorder.
Kondwani speaks with Johnny (John) about his life & work in the community of Charlestown ward, Manchester. He shares the impact of mental wellbeing and the importance to seek support.
The World Health Organisation (WHO) defines mental health as ‘a state of wellbeing in which the individual realises his or her abilities, can cope with the normal stresses of life, work productively and fruitfully, and is able to make a contribution to his or her community’.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
37. Getting To Know ME - Chapter 19 (Small Things Bring Great Strength)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experiences and hear from specialists on their experiences treating this condition.
Emma (aka Poss) lives in New Zealand and loves being creative, gaming and spending time with her cat. She shares what it's like living with ME/CFS for 12 years whilst balancing other health conditions including Borderline Personality Disorder (BPD). She also finds time to run an amazing Discord community offering support from lived experiences. You can connect via:
Twitter - https://twitter.com/impossumble_
Instagram - https://www.instagram.com/impossumble
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
36. Exploring Depression In Men
Research shows that "only 36% of referrals to NHS talking therapies are for men". Kondwani chats with Nathaniel on why Depression could be affecting men differently and what creative tools could be used to explore this further.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
35. The Power Of Self Reflection
A person with a long term health condition spend 3 hours a year on average with a health care professional, for the remaining 8757 hours in the year we are on our own to look after yourself. Babz speaks with Dr. Tammy, a Qualified Counselling Psychologist, on the power of self reflection from a health perspective, especially for Minority groups.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
34. Getting To Know ME - Chapter 18 (Room For Improvement)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experiences and hear from specialists on their experiences treating this condition.
Reflecting on her diagnosis experiences, Evan highlights the need for improved treatment methods and understanding of Myalgic Encephalomyelitis (ME). You can follow her advocacy work @cornerstoneforthoughts
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
33. Getting To Know ME - Chapter 17 (Hopes & Dreams)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experiences and hear from specialists on their experiences treating this condition.
Megg was diagnosed with ME/CFS from a young age whilst in school. Megg shares her inspirational work through the Millions Missing Manchester movement and her passion for crafting @MeggMakes
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
32. Sickle Cell Disease: Chapter 5 (We Are in This Together)
Between 12,500 and 15,000 people live with sickle cell disease in the UK. Moyo, Lewis and Mwape come together for an exclusive episode to share their stories, experiences and support with each other. This is a very rich podcast with varying view points on the sickle cell disease and how it impacts the person with the lived experience.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
31. Getting To Know ME - Chapter 16 (M.emory lan.E Part 2)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experiences and hear from specialists on their experiences treating this condition.
In this episode (Part 2) you will hear snapshots from Kondwani's conversations with Lee, Will, Becky and Tara as they take us on a journey of living with M.E.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
30. Getting To Know ME - Chapter 15 (M.emory lan.E Part 1)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experiences and hear from specialists on their experiences treating this condition.
In this episode you will hear snapshots from Kondwani's conversations with Tony, Shirley, Cody and Charlie as they take us on a journey of living with M.E.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
29. Sickle Cell Disease: Chapter 4 (Do The Best You Can)
Between 12,500 and 15,000 people live with sickle cell disease in the UK. Lewis is a GP living with Sickle Cell, who believes in rolling the dices of life and just making sure you maximise your everyday. How does he live by this ethos whilst accepting the reality of his condition?
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
28. Getting To Know ME - Chapter 14 (Self-Care is The Best Care)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experiences and hear from specialists on their experiences treating this condition.
How does one manage living with a long term health condition? Tara shares her experiences living with ME (Myalgic Encephalomyelitis) and tips on self-care that helps her manage her condition.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
27. Expert Patient Programme
A free NHS service for patients living with long-term health conditions and/or carers. Research has shown that people living with long-term health conditions spend only three hours a year on average with a healthcare professional. For the other 8757 hours of the year they look after themselves. This programme can provide you with the tools to self-manage and deal with your conditions better on a day to day basis.
For more information about this programme go to www.manchesterlco.org or email mft.epp@nhs.net / Call 0161 371 2105 if in Manchester, UK.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
26. Upbeat Coeliac
Melanie discovered she had Coeliac disease after being diagnosed at a young age. Facing challenges to eating safe food in order to mange the condition, she uses her instagram @feedthecoeliac to raise awareness of Coeliac disease and how to eat safely.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
25. Sickle Cell Disease: Chapter 3 (It Does Not Define Me)
Between 12,500 and 15,000 people live with sickle cell disease in the UK. Moyo lets us peer into her life as she unpacks why she never lets Sickle Cell disease define her and how far she can go. Are there any limits to life living with sickle cell?
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
24. Getting To Know ME - Chapter 13 (One Path that Leads to Healing)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experience and hear from specialists on their experiences treating this condition.
Reflecting on Tokyo 2020 summer Olympics & Paralympics, Kondwani shares his love for sports despite being unable to take part due to ME/CFS diagnosis.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
23. Getting to know ME - Chapter 12 (Cutting My Life Down to 25%)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experience and hear from specialists on their experiences treating this condition.
Giving up rugby, facing diagnosis, running Millions Missing Manchester, Becky shares her path to living life after cutting life down to 25%
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
22. Psoriasis: My Skin Dies Every 4 hours
Psoriasis is a skin condition that causes red, flaky, crusty patches of skin covered with silvery scales. Jon has been living with this condition for a number of years but question is, did he let Psoriasis get under his skin?
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
21. Sickle Cell Disease: Chapter 2 (Family is Everything)
Between 12,500 and 15,000 people live with sickle cell disease in the UK. KC always wondered why he struggled more than his brothers with mundane tasks. And then his mother gave him the news, this changed his life forever. Was he still able to thrive with this condition?
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
20. Getting to know ME - Chapter 11 (Life Beyond M.E)
From the Isle of Wight to Manchester, Will shares how his life has changed from being diagnosed with Myalgic Encephalomyelitis (ME/CFS) as a teenager to now achieving the things he wants as an adult.
[This is a second part of a two part episode with Will]
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
19. Getting to know ME - Chapter 10 (Teenage M.E)
Being diagnosed with a marginalised health condition at a very young age whilst in school on the Isle of Wight, Will shares how bad his M.E was back then before getting much better.
[This is a first part of a two part episode with Will]
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
18. We Are Fully Vaccinated, Are You?
This episode is part 2 of the Covid-19 vaccine stories of Babz (CEO) and Kondwani (Director) of Freshrb, who speak candidly about what it was like getting their second vaccination. They look into the whole process, from getting the text to side effects after the vaccinations.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - https://www.freshrb.com/silentelephantproject
17. Sickle Cell Disease: Chapter 1 (Sickle Cell Anaemia Trait Carrier)
Between 12,500 and 15,000 people live with sickle cell disease in the UK. Mwape is a carrier of the Sickle Cell Anaemia trait who lives with the same symptoms as someone who has been fully diagnosed with Sickle Cell Disease. What does it mean to be a carrier and what is life like being a carrier?
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
16. Getting to know ME: Chapter 9 (Fatherhood, an Alien Concept)
Lee enjoys spending time watching movies with his kids. In this second episode, Lee dives deep into life as a parent and the importance of seeking support.
[This is a second and final part of a two part episode with Lee]
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
15. Getting to know ME: Chapter 8 (Family, Gaming and M.E)
Lee is very passionate about gaming and family life. In this episode, Lee sheds a light on what it means to be a father with M.E, diagnosed over 20 years ago at a very young age.
[This is a first part of a two part episode with Lee]
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
14. Vitiligo: Stand With Us and Be An Ally
Aasima, a post graduate from Manchester Metropolitan University, talks about her life living with Vitiligo from a very young age and also shares her research on Vitiligo. More information about Aasima's research findings can be found via her Instagram page @PositiveLiving_23.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
13. Vitiligo: Just Be You
Joti Gata-Aura is a British-Asian presenter & influencer and is a Vitiligo Ambassador, who has come to share her story of what living with vitiligo is like and how to stand confident with this condition. She is also the founder of www.positivelydiverse.co.uk . Definitely a breath of fresh air to see how motivated she is and we cannot wait for you to hear her story.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
12. Getting to know ME: Chapter 7 (Team Podcast Recap)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experience and hear from specialists on their experiences treating this condition.
In this episode, the Freshrb team which consists of Kondwani, Lucy, Sarah and Babz have a sit down to candidly review all the 'Getting to know ME podcasts' so far.
What is SEP? Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP. For more info - http://www.silentelephantproject.org/
---
This episode is sponsored by
· Anchor: The easiest way to make a podcast.
https://anchor.fm/app
Support this podcast: https://anchor.fm/silent-elephant-project/support
11. Getting to know ME: Chapter 6 (Art and M.E)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experience and hear from specialists on their experiences treating this condition.
In this final episode with Cody, we delve deeper into how she uses art as a support system, the love she has for her daughter and how M.E has kept her grounded but also allowed her to grow as a person.
[This is the second part of a two part episode with Cody]
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
10. Getting to know ME: Chapter 5 (M.E and ME)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experience and hear from specialists on their experiences treating this condition.
Today we hear from Charlie, founder of M.E & Me website and organiser for Millions Missing Leeds. After being diagnosed at a young age, Charlie is passionate about fighting for those with M.E to be heard.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
9. Asthma: It Feels Like You Are Dying
Honey is very passionate about using art and filmmaking as a therapeutic medium. Honey has collaborated and worked with us for over 2 years now, delivering Silent Elephant Project Short Film and Documentary workshops. Today she shares what it's like living with Severe Asthma, navigating Covid-19 pandemic and tips on managing day to day whilst living a fulfilled life.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
8. Getting to know ME: Chapter 4 (Sandbags For Muscles) Pt. 1
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experience and hear from specialists on their experiences treating this condition.
Today's episode features Cody from the USA. Cody shares her diagnosis journey of M.E, her experiences of giving birth and being a parent. [This is the first part of a two part episode with Cody]
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
7. Our Covid-19 Vaccine Stories
In this episode, Mr. Babz (CEO of Freshrb) and Kondwani (Director of Freshrb) tell their stories on having their first doses of the Covid-19 vaccine. Mr. Babz had the AstraZeneca and Kondwani had the Pfizer. They speak about their journeys to having the vaccines, their doubts prior to having it, the research they did and the side effects they faced.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/
6. Getting to know ME: Chapter 3 (A spoon at a time)
In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will also reflect on the impact of living with a chronic health condition, hear from those with lived experience and hear from specialists on their experiences treating this condition.
In this episode, we hear from Shirley on how she manages to live with M.E and the importance of family support. Shirley also shares coping strategies such as the Spoon Theory, her passion for volunteering and love for Glastonbury music festival.
We hope you enjoy this episode.
What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactive projects. ‘An elephant in the room’ is an English-language metaphorical idiom for an obvious problem no one wants to discuss, or a condition no one wants to challenge. This phrase has coined the main objective of the SEP.
For more info - http://www.silentelephantproject.org/