7 episodes

The charity SMA UK invites different hosts from across the SMA Community together to discuss different topics. This is great place to find useful tips, recommendations, and hear personal stories.

Living With SMA Spinal Muscular Atrophy UK (SMA UK)

    • Business

The charity SMA UK invites different hosts from across the SMA Community together to discuss different topics. This is great place to find useful tips, recommendations, and hear personal stories.

    7: Treatment Part 1: Risdiplam

    7: Treatment Part 1: Risdiplam

    SMA UK Host Martyn Sibley talks to Emma Vogelmann, Ross Hovey and Olivia Webster about their experience with Risdiplam.   Each of our guests today shares their own  personal views and individual stories.

    If you prefer to watch this episode, please visit our YouTube channel here.

    If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk

    • 1 hr 13 min
    6: Siblings - Part 1: Jordanne & Shannon

    6: Siblings - Part 1: Jordanne & Shannon

    SMA UK Host Jordanne talks to her sibling Shannon about their relationship growing up and what things are like now.

    If you prefer to watch this episode, please visit our YouTube channel here.

    If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk

    • 22 min
    5: Parents Perspective of Diagnosis

    5: Parents Perspective of Diagnosis

    SMA UK Host Suzanne talks to her mum Margaret where we hear about her experience as a parent and the SMA diagnosis experience 25 years ago.

    If you prefer to watch this episode, please visit our YouTube channel here.

    If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk

    • 42 min
    4: Adult Onset SMA

    4: Adult Onset SMA

    SMA UK Host Martyn Sibley talks to Peter Hartley, who shares his personal journey to a diagnosis of SMA Type 4 in adulthood. Talking about how this ‘Adult Onset’ form of the condition has changed his life, Peter describes some of the challenges he’s faced and overcome and how he’s adapted to living with SMA.

    You can find additional information on Adult SMA through the Spinal Muscular Atrophy UK website links below:

    LOOKING AFTER YOURSELF IF YOU'RE AN ADULT WHO HAS HAD A RECENT DIAGNOSIS OF SMA:
    https://smauk.org.uk/recent-diagnosis-adult-onset-sma

    THE GENETICS OF SMA:
    https://smauk.org.uk/the-genetics-of-5q-sma

    NEUROMUSCULAR CENTRES:
    Please click on the 'Accessing Physio & OT Support heading for list of centres
    https://www.livingwithsma.org.uk/adults/posture-movement-exercise-adults

    • 33 min
    3: My Experience of Renting

    3: My Experience of Renting

    Following on from Episode 2 on Home Adaptations, SMA UK Host Josh Wintersgill talks with Julian Fiorentini about the challenges he faced around finding and renting accommodation in the UK.  Josh shares his journey moving away from home at 18 years of age to finding accommodation and living independently.

    If you do have any questions for Josh, Julian and  the rest of the team at SMA UK please email us at connections@smauk.org.uk

    • 28 min
    2: My Experience of Home Adaptations

    2: My Experience of Home Adaptations

    SMA UK Host Josh Wintersgill talks to Julian Fiorentini, who shares his personal journey from school days, through living in a care home to his experience of making adaptations to his home, as an adult.  Not everyone will need or use the same adaptations in their home, but we hope this conversation gives you a greater understanding of Julian’s own experience and views. 

    If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk or if you would like more info please browse through out website here: https://bit.ly/3wwfoc4 

    • 48 min

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