Everyday People Talking Health

Katie is a founder of Starling CIO - a charity offering support and opportunities to young people with Neurodiversity. A great advocator for neurodiverse individuals, Katie shares what it’s like to live with CPTSD and how her experiences influenced her management tools. We talked about impact of long-term health conditions, Autism, ADHD, Dyslexia and finding support that works for you as an individual.

CPTSD (complex post-traumatic stress disorder) is a condition where you experience some symptoms of PTSD along with some additional symptoms, such as: difficulty controlling your emotions.[Mind.org.uk]

Links and more info:

• Starling CIO
• WHO

Credits:

• Podcast Editor - Kate Mardon

We hope you enjoy this episode 😃

Have a health story to share? Or know someone who would be interested? - We hope to connect with you@Freshrbcic&@Emp_Healthand also stay in touch via [email protected]

What is SEP?

Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactiveprojects. ‘Anelephantin 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

--- Send in a voice message: https://podcasters.spotify.com/pod/show/silent-elephant-project/message Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support

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 250,000people in England and Wales with ME/CFS, with about 2.4times 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@Freshrbcicand@Emp_Healthor stay in touch via [email protected]

What is SEP?

Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactiveprojects. ‘Anelephantin 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

--- Send in a voice message: https://podcasters.spotify.com/pod/show/silent-elephant-project/message Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support

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:

• The Migraine Trust
• The Sunflower Lanyard Scheme

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@Freshrbcicand@Emp_Healthor stay in touch via [email protected]

What is SEP? Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactiveprojects. ‘Anelephantin 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

--- Send in a voice message: https://podcasters.spotify.com/pod/show/silent-elephant-project/message Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support

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::

• ME association
• Action for ME
• #ME Action

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@Freshrbcicor@Emp_Healthor stay in touch via [email protected]

What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactiveprojects. ‘Anelephantin 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

--- Send in a voice message: https://podcasters.spotify.com/pod/show/silent-elephant-project/message Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support

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:

• ME association
• Action for ME

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- [email protected]

What is SEP? Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactiveprojects. ‘Anelephantin 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

--- Send in a voice message: https://podcasters.spotify.com/pod/show/silent-elephant-project/message Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support

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- [email protected]

What is SEP? Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactiveprojects. ‘Anelephantin 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

--- Send in a voice message: https://podcasters.spotify.com/pod/show/silent-elephant-project/message Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support

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.

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- [email protected]

What is SEP? Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactiveprojects. ‘Anelephantin 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

--- Send in a voice message: https://podcasters.spotify.com/pod/show/silent-elephant-project/message Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support

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 [email protected]

What is SEP?
Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactiveprojects. ‘Anelephantin 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

--- Send in a voice message: https://podcasters.spotify.com/pod/show/silent-elephant-project/message Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support

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 [email protected]

What is SEP?

Silent Elephant Project (SEP) gives marginalised life limiting and long-term health conditions a platform, through creative and interactiveprojects. ‘Anelephantin 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

--- Send in a voice message: https://podcasters.spotify.com/pod/show/silent-elephant-project/message Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support

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:

• Twitter
• Instagram
• Facebook
• Linkedin

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 [email protected]

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

--- Support this podcast: https://podcasters.spotify.com/pod/show/silent-elephant-project/support