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.

🎧 For more episodes like this, subscribe and follow Voices of One Fylde: https://feed.pod.co/voices-of-one-fylde

#HealthyEating #VoicesOfOneFylde #OneFylde