Mortal And Strong - Episode 22 - Sarah P

Voice No. 20....1/5th the way through our 100 Voices and here we have a very rare and unique Voice sharing insight into something hardly ever discussed or even known about. The delightfully optimistic and life-loving Sarah sharing her journey of having two very rare conditions (one of which linked to a genetic mutation) - HNPP (Hereditary Neuropathy With Pressure Palsies) and Hypermetabolism. These two conditions are unrelated but complicate each other. At 31 Sarah went from being a healthy mum with no health issues, began a weight loss journey which was a healthy choice in response to being overweight. However after a bought of Covid things went drastically wrong. In 6 months Sarah went from a size 18 down to a size 4. Even when Sarah stopped dieting the weight continued to fall, and was dismissed by many health care professionals labelling her as having an eating disorder. Eventually Sarah was diagnosed with hypermetabolism and her body needs 5000 (more than double) her daily requirements just to maintain her weight. As a result Sarah has a permanent Jej tube and is both tube fed and eats normally. In addition to this Sarah developed a foot drop, numbness and multiple neurological symptoms, resembling MS. Sarah was diagnosed with HNPP which for Sarah means she has demyelination of her peripheral nerves and a very severe form leaving her permanently disabled.

Despite all this Sarah realised she had two options - to go on a negative spiral or choose a positive spiral. Sarah deliberately seeks joy in every single day and embraces life to the fullest. After facing her mortality several times, Sarah has such a powerfully strong philosophical approach to life "Everyone has two lives. The second one begins when you realise you only have one". Sarah's amazing story of strength includes how she copes as a parent with a disability, how she delivered her own baby and resuscitated him herself, and how she manages not only as a disabled mum but a disabled mum with a disabled child. Her strength and love of life is inspiring and we are honoured to have her share her story with us and be one of the Mortal And Strong charity ambassadors.

Mortal and Strong is a campaign shining the spotlight on women facing their own mortality - those affected at a young age by a life changing illness or disease. 100 artworks produced by artists across the country along with a powerful photography series ‘Scars of Gold’ inspired by kintsugi. The voices will share their stories through the podcast released bi-weekly. Through the project Mortal And Strong will be featuring and collaborating with up to 20 chosen charities that are linked with the topics discussed in the project - to raise awareness of their work, fundraise for them with our exhibition and signpost people to right places for support. 

Founder & concept - Dr Liz Murray

Podcast Presenters for this episode - Dr Liz Murray & Laura Middleton-Hughes

Photographer Sammy Weston

For more information on support available for these issues discussed in todays episode, including direction to medical information, visit our website. This episode is not intended as specific medical advice, always see your own GP/physician if you have any concerns regarding your own health. 

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