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Living With SMA

Author: Spinal Muscular Atrophy UK (SMA UK)

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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.
8 Episodes
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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
Chris talks to his brother Alex, asking him what it's like having a brother with SMA. They both share a passion for sport and are massive fans of Northampton Saints. Chris has also coached his brother Alex, helping him to sporting glory by winning the National Championships in flag football and being named final MPV in 2017.If you prefer to watch this episode, please visit our YouTube channel here.If you do have any questions for Chris, Alex or the team at SMA UK please email us at connections@smauk.org.uk
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
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
4: Adult Onset SMA

4: Adult Onset SMA

2021-05-1733:47

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-smaTHE GENETICS OF SMA:https://smauk.org.uk/the-genetics-of-5q-smaNEUROMUSCULAR CENTRES:Please click on the 'Accessing Physio & OT Support heading for list of centreshttps://www.livingwithsma.org.uk/adults/posture-movement-exercise-adults
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
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 
SMA UK Hosts Josh Wintersgill, Becca Torricelli and Emma Vogelmann talk about mental health and wellbeing during the pandemic, sharing their own  personal views and individual stories.
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