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Email: support@total.com
Phone: 1-800-Total-Theme
Address: Las Vegas, Nevada

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I Have A Mitochondrial Disease: Update On The Search For A Diagnosis

Thursday 15th November I had a neuromuscular follow up with my fantastic consultant Dr Ros Quinlivan at the National Hospital for Neurology and Neurosurgery. I've been seeing Dr Quinlivan after I was referred to the National Rare Mitochondrial Disease Service,…

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NHS Peer Leadership Academy: Day 6 – The Final Day

And so it is, the final day of the Autumn 2018 cohort of the NHS Peer Leadership Academy. This continues with my series in which you can read previous blogs sharing my PLA journey by clicking the hyperlinked text for…

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2018 Disability Power 100 List: Becoming One Of The Most Influential Disabled People in Britain

This week it was announced that I had been named as one of the 100 most influential disabled people in Britain, on the Shaw Trust Disability Power 100 List.  What is the Disability Power 100 List? The Shaw Trust Power…

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IHUG/ESNEFT User Group Celebration & Workshop; 12/10/18

Fantastic day today at the IHUG (Ipswich Hospital User Group) celebration at Ipswich Hospital today where I was giving a presentation and then supporting their workshop afterwards.   In my speech I talked about my work and achievements, how I…

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Hospice Care Week & #HatsOn4CPC

This week it’s Hospice Care Week. All of you know I am a palliative and hospice care advocate having been a beneficiary of such services since I was 17.  You all know my story, being born with health problems and…

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On Turning 25 (Tuesday 2nd October)

On Tuesday 2nd October it was my birthday; a birthday I was not expected to reach. I turned 25; which is at least 2 years longer than I was expected to reach. I’ve lived a quarter of a century! At…

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Receiving my Honorary Degree of Master of the University from the Open University – 21/09/18

On Friday 21st September 2018 I received a prestigious accolade: I was awarded an Honorary Degree of Master of the University from the Open University, for commitment to public services. What an incredible thing to receive, to be recognised in…

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Awareness Weeks, Months & Days in September

Well back to blogging but on my new website. I thought I’d do a post about a few awareness days/weeks/months that are current this month or fall this week. Sepsis Awareness Month  First off, September is Sepsis Awareness Month. I’ve…

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Hope For A Diagnosis: My NMCCC Admission March 2018 for a Muscle Biopsy

This week I was admitted to the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, Queen Square (NHNN). This admission was for my muscle biopsy, long awaited - I’ve been waiting since 2016, and we…

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Accessibility, Complex Needs & Hospitals – A Blog In Honour of Adam Bojelian

I’m a 24 year old young lady with a life-limiting condition that has caused complex physical and medical needs. I am completely dependent on a specialist electric wheelchair, although forced to spend a lot of time in bed, I require…

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