Podcast Episode: Rare Disease Day – Understanding Genetic, Rare, and Undiagnosed Conditions

Liner Notes

In this special episode of Voices of One Fylde, hosts Rebecca Carter-Lindsay and Marilyn Booth explore the significance of Rare Disease Day, observed every year on 28th February. The episode shines a light on the challenges faced by individuals living with genetic, rare, and undiagnosed conditions, as well as the impact on learning disabilities and development.

What’s Covered?

• An introduction to genetic, rare, and undiagnosed conditions.
• The impact on learning disabilities, including conditions like Fragile X syndrome and Cri du chat syndrome.
• The challenges families face, from diagnosis difficulties to lack of specialist healthcare.
• The importance of awareness and advocacy, and what needs to change for better support.

Why Listen?

• Gain insight into why rare diseases matter and how they affect people’s daily lives.
• Learn about organisations like SWAN UK, Genetic Alliance UK, and Rare Disease UK and the work they do.
• Discover how you can help by raising awareness and supporting individuals with rare conditions.

Listen Now

📻 Tune in live on One Fylde Radio: onefylderadio.co.uk

🎧 Download or stream anytime: [Insert Podcast Link]

🌍 Learn more about Rare Disease Day: Rare Disease Day Official Website

Join the Conversation

Use #RareDiseaseDay #OneFylde #VoicesOfOneFylde on social media to share your thoughts and support the cause!

In this special episode of Voices of One Fylde, hosts Sian Edmunds and Marilyn Booth sit down with Bradley and Chris, two of the key figures behind David Lewis Live—the brand-new radio station from the David Lewis charity.

David Lewis has been supporting individuals with learning disabilities, epilepsy, and autism for years, but now they’re making waves in the world of radio. David Lewis Live is giving people a platform to express themselves, develop new skills, and connect with the wider community through broadcasting.

What’s in this episode?

• How the idea for David Lewis Live came to life
• The types of shows and content the station is broadcasting
• How individuals at David Lewis are involved in presenting and producing radio
• The impact the station is already having on confidence and creativity
• Future plans and potential collaborations
• How listeners can tune in and support David Lewis Live

How to Listen & Get Involved:

Want to hear David Lewis Live in action? Find out more and tune in by visiting the David Lewis website at www.davidlewis.org.uk or following them on Facebook at facebook.com/davidlewiscentre.

Join the Conversation!

What do you think about David Lewis Live? Share your thoughts on One Fylde Radio’s social media, and help spread the word about this brilliant new station!

Empowering voices, creating opportunities, and bringing communities together – all on David Lewis Live!

• Introduction:
• Hosts Sian and Rebecca discuss the importance of healthy eating and why it matters for physical and mental well-being.
• Key Takeaways:

1. Why Healthy Eating is Important:

• Boosts energy, improves mood, and helps with focus.
• Reduces the risk of long-term illnesses like heart disease and diabetes.
• Healthy eating is about balance, not cutting out treats entirely.

1. Understanding Food Groups:

• Fruits and vegetables are packed with essential vitamins and minerals.
• Proteins (e.g., chicken, fish, beans) help maintain muscle strength.
• Carbohydrates (e.g., wholegrain bread, pasta) provide long-lasting energy.

1. Healthy Eating on a Budget:

• Buy frozen fruits and vegetables to save money.
• Plan meals in advance and stick to a shopping list.
• Cook at home to avoid expensive takeaways and ready-made meals.

1. Making Small Changes:

• Swap sugary drinks for water or portion down meals.
• Add extra vegetables to your meals.
• Replace sugary snacks with healthier options like yogurt, fruit, or nuts.

1. Overcoming Sensory Issues:

• For those with autism, experiment with cooking methods to alter textures (e.g., steaming veggies).
• Introduce new foods slowly by adding small amounts to familiar meals.
• Closing Notes:
• Healthy eating is about making small, manageable changes.
• Everyone’s body is different, so find what works for you.

Resources Mentioned:

• Apps like Money Dashboard and Emma for budgeting.
• Online templates or simple notebooks for tracking meals and costs.

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In this insightful episode of "Voices of One Fylde," hosts Marilyn, John, and Rebecca are joined by Crystal, a dedicated learning disability nurse. Crystal sheds light on the importance of Annual Health Checks for individuals with learning disabilities. She explains what these health checks entail, why they are crucial, and how they can help in maintaining overall well-being. Crystal also discusses the ideal age to start these checks, their frequency, and what doctors typically look for during the examinations. Listeners will learn how parents and carers can find more information and what steps to take if someone has never had an Annual Health Check before. This episode is a valuable resource for anyone looking to understand and promote better health practices within the learning disability community. Tune in for practical advice and expert insights that can make a real difference in the lives of many.

Welcome to a special episode of Voices of One Fylde, where we bring you highlights from the vibrant Lancashire Disability Pride 2024, held at Preston Flag Market. This incredible event celebrated individuality, community, and pride, featuring engaging stalls, inspiring speeches, and lively performances.

Our hosts, Marilyn, John, and Rebecca, had the pleasure of interviewing attendees, capturing their heartfelt stories and unique perspectives on what Disability Pride means to them. Tune in to hear these insightful interviews, the joyous atmosphere, and the music that brought everyone together. Join us as we celebrate the spirit of inclusion and the strength of our community.

Lisa Lamb’s journey has taken her from serving in the British Army to supporting individuals with learning disabilities and autism as an Area Manager at One Fylde. In this episode of Voices of One Fylde, hosts Rebecca Carter-Lindsayand Marilyn Booth sit down with Lisa to discuss:

• Her experiences in the British Army and the challenges she faced.
• Her transition into social care and what inspired her to take on this new role.
• How leadership, discipline, and teamwork from her military career have influenced her work at One Fylde.
• Advice for those looking to work in the care sector and why it’s such a rewarding career.

Mental health struggles are often misunderstood, overlooked, or ignored when it comes to individuals with autism and learning disabilities. Too often, professionals focus only on the disability itself, failing to recognise conditions like depression and anxiety, which may present differently.

In this episode of Voices of One Fylde, hosts Sian Edmunds, Rebecca Carter-Lindsay, and Marilyn Booth explore:

✔️ Why mental health issues in people with autism or learning disabilities often go unnoticed.

✔️ The real-life impact of being ignored and the challenges individuals face.

✔️ How families, friends, and support workers can advocate for better mental health care.

✔️ The need for professionals to look beyond the diagnosis and truly listen.

Mental health is just as important as physical health, and everyone deserves to be heard and supported. Join us as we discuss how to break down barriers and ensure that no one is left behind when it comes to mental well-being.

The internet is a big part of our everyday lives, but staying safe online is more important than ever. In this episode of Voices of One Fylde, hosts Marilyn and Rebecca share essential tips to help you navigate the digital world safely and confidently.

From creating strong passwords to recognising scams and protecting your personal information on social media, Marilyn and Rebecca break down simple steps that make online safety manageable for everyone — especially those with learning disabilities or autism.

Topics include:

• Why online safety matters
• How to create strong passwords and use two-factor authentication
• Spotting scams and fake emails
• Keeping your social media accounts private
• Safe online shopping tips

Whether you’re a seasoned internet user or just getting started, this episode will give you the tools to protect yourself while enjoying everything the online world has to offer.

🎧 Listen now and subscribe for more helpful episodes: https://feed.pod.co/voices-of-one-fylde

#VoicesOfOneFylde #OnlineSafety #CyberSecurity #OneFylde