The Raspberry Talks by The Cavernoma Society

The Cavernoma Society
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A monthly podcast by UK charity, The Cavernoma Society, covering cavernoma stories from patients, experts, and carers. We'll be talking all things cavernoma of the brain and spine and how it affects sufferers and their loved ones. A cavernoma is a lesion made up of abnormal blood vessels most commonly found in the brain or spine. It affects 1 in 600 people in the UK, but only 1 in 400,000 are diagnosed every year. It can cause strokes, seizures, neurological deficits and even death. 

Episodes

  1. Ep 2 Kevin Weedon: "It has an impact on the whole family - you almost grieve your old life."

    04/24/2023

    Ep 2 Kevin Weedon: "It has an impact on the whole family - you almost grieve your old life."

    In Episode two of The Raspberry Talks Podcast, Simona speaks with Kevin Weedon, a spinal cavernoma patient who has recently gone through surgery and has his spinal cavernoma removed, having lived with it for the past 20 years. Simona and Kevin speak about the lack of information regarding cavernoma, the support available online through charities and support groups, the impact diagnosis and surgery have on the whole family, and the journey from surgery to recovery.  We hope you enjoy it. Please do share and comment. If you'd like to share your story with us, please get in touch - hello@cavernomasociety.org.uk

    51 min
  2. Ep 1 - Joel Roberts - "They sacrificed my legs to save my arms."

    10/13/2021

    Ep 1 - Joel Roberts - "They sacrificed my legs to save my arms."

    In our first episode of The Raspberry Talks Podcast, Simona speaks with Joel Roberts, who was paralysed from the waist down following his spinal cavernoma diagnosis and surgery.  Joel's life changed overnight at the age of 28, when he walked into hospital with a 'numb leg' below the knee, and 6 months later exited a spinal rehabilitation unit in a wheelchair. Joel is paralysed from the waist down, following emergency surgery to remove a cavernoma from his spinal cord, which severed his spinal cord and left him with a permanent disability. However, as Joel so positively says, his 'legs were sacrificed to save his arms', because blood from the cavernoma was travelling up his spinal cord and could have left him with further disabilities had the surgeons not acted quickly.  We speak about that fateful day on Oct 7th 2020 when Joel went to hospital, his rehabilitation, the emotional aspects of his journey, the changes he's had to make, his day-to-day life now, the support from his family, and finally, his journey to acceptance.  Thank you to Joel for speaking so openly and honestly. We hope you enjoy this episode. Please do share and comment.  If you'd like to share your story please do get in touch. Hello@cavernomasociety.org.uk

    49 min
  • 2 Episodes

About

A monthly podcast by UK charity, The Cavernoma Society, covering cavernoma stories from patients, experts, and carers. We'll be talking all things cavernoma of the brain and spine and how it affects sufferers and their loved ones. A cavernoma is a lesion made up of abnormal blood vessels most commonly found in the brain or spine. It affects 1 in 600 people in the UK, but only 1 in 400,000 are diagnosed every year. It can cause strokes, seizures, neurological deficits and even death. 

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