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Rare Disease Day 2019 – What Rare Means For Me

Today is Rare Disease Day 2019, celebrating people living with, and raising awareness of rare diseases.  There are between 6000 and 8000 rare diseases, with new ones being discovered on a regular basis and equally more and more already known…

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2018 – What A Year! & Looking Ahead to 2019

What a year 2018 has been. Such highs, such lows, but overall, it’s been an incredible year. I have had such fun, achieved a lot, received recognition for my work, been involved with even more work and projects, I’ve given…

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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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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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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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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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Happy 70th Birthday, NHS – Thank You For Keeping Me Alive

Happy 70 Birthday, NHS.Today we celebrate the NHS and all its successes and glory. An institution not only providing free healthcare for all, regardless of need or ability to pay, but one that is a national treasure. The NHS may…

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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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Sepsis Survivors: How My Family Has Been Touched By Sepsis

(c) UK Sepsis TrustSeptember is Sepsis Awareness Month and Wednesday 13th September is this year's World Sepsis Day. My family has been touched by sepsis a number of times. We know too well how serious sepsis is. There’s an estimated…

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Facing Facts; Still A Life Worth Living

On Tuesday 4th April, my hospice nurse Nicky and I sat down and talked the nitty gritty. We talked about how I am, what I've been up to, what's troubling me - the same as always. Then the conversation got…

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