#WhyWeDoResearch Campaign
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"How else would we find cures? Let's get quality of life back" by Carol Bewick (@BewickCarol) (Professional Perspective - 3)

11/19/2015

5 Comments

 
For many people diagnosed with sight loss there is no treatment. No magic pill to turn back time to a day when you could see you husband, your child, your parents. No drug to halt your journey into a steadily narrowing world of experience. At Fight for Sight we don’t believe that has to be the case. We don’t see sight loss as inevitable. We are totally dedicated to funding research so that no-one has to face a world where they can’t see.
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In recent years so much has been done to lengthen life. So many new therapies have been introduced to keep us alive. But what about the quality of that life. We think everyone deserves to enjoy the wonderful things sight has to offer – beautiful views, faces of loves ones, reading, shopping, your reflection in the mirror. 
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We are told that sight is the sense people would least like to lose. People would rather lose a limb.

It comes as a constant shock that only 1% of funding from the top 20 sight loss charities goes on scientific research. Because there are so few treatments available there is a constant and growing need for care and support and charities must fill the gap. Fight for Sight is aiming to redress the balance. We are the main UK charitable funder of eye research. We fund research into the causes, prevention, diagnosis, treatment and ultimately reversal of sight loss. The UK is world leading in eye research with so many new therapies in the final stages of clinical trials. Without our seed funding this pipeline wouldn’t be fed. We have worked with people with first-hand experience of sight loss, people like Irenie (@reenwilson), to make sure we prioritise our funding by what people really want.

Fight for Sight is currently funding nearly £9m of research across 35 institutions in the UK. But it is never enough. We fund for people like Irenie and the 100 people a day in the UK who start to lose their sight. Help us to create a future where everyone can see www.fightforsight.org.uk #whywedoresearch

Research into sight loss is cutting edge: from apps to photograph the back of the eye and help diagnosis to chips implanted in the eye; from video games to 3-d printing of retinal cells; from replacing faulty genes to patching damage with stem cells. Eye research is exciting and we are proud to be pioneering the way.

#WhyWeDoResearch "How else would we find cures? Let's get quality of life back"

@BewickCarol
​@FightForSightUK
5 Comments

"Being involved in research has given me some control back over my illness"                   by Irenie Ekkeshis (@HSJNews Patient Leader 2015) (Patient/public perspective 2)

11/3/2015

0 Comments

 
​In 2011 I was diagnosed with an incredibly rare but sight threatening eye infection called Acanthamoeba Keratitis. 

​The illness changed my life literally overnight; from being a healthy, energetic individual, into someone who was absolutely consumed by illness. With weekly hospital visits, endless medication and severe symptoms including pain and photophobia, within six months of being diagnosed, I had lost my job, my social life and confidence.
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When it happened to me, I did the obvious thing; I went to Google and typed in ‘Acanthamoeba Keratitis’. 

I read wildly inaccurate reports of Acanthamoeba spreading from the eye into the brain and causing death (this isn’t true). I read that most people who get AK need a cornea transplant (this isn’t true either). I read that there is no consistent treatment standard for AK across the world, and that very little data exists on the efficacy of one treatment over another (this is true). Naturally I was frightened half to death by this.
 
But things changed for me when I was invited to participate in a study being undertaken at Moorfields, looking at risk factors for AK. I remember having to give a DNA sample as well as to collect water samples from my house.  I remember how excited I was to send the samples to the lab.
 
For the first time in a long time, I felt somehow I was regaining some sense of control over what was happening to me - actually for all of us affected by AK. I was helping change the course of the way this awful disease might be diagnosed and treated in future. 
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Sight Loss and Vision Priority Setting Partnership meeting
​Around that time, I was also invited to participate in Fight for Sight’s Sight Loss and Vision Priority Setting Partnership  - an initiative designed to bring together patients, carers, clinicians and researchers to prioritise unanswered research questions.
 
This was an incredible initiative - standing side by side with doctors – feeling like I had a valid point of view, able to enrich that conversation through my own experiences.
 
Since then, I’ve worked closely with cornea researcher Dr Nicole Carnt, to think about what questions research can answer about AK. Together, we’ve even started developing new proposals for studies which help understand its treatment, diagnosis, and crucially – for prevention. 
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My #WhyWeDoResearch in the House of Commons, House of Parliament, London, UK (28.10.15)
​Being involved in research has given me back some control over my illness and my life. And I simply can’t think of a better reason to explain why we should all do it. 

Irenie Ekkeshis
Twitter: 
@reenwilson
SMK Health Campaigner of the Year and @HSJNews Patient Leader

Note about this blog (by @ClaireGibbsUK): 

I met Irenie at the House of Commons after we were both invited to attend an All Party Parliamentary Group on Medical Research (with thanks for @amrc). I was absolutely inspired by Irenie's story and the support which the Fight for Sight team give to research and helping patients be involved in their care and treatment. Irenie is the reason why so many of us do research and her story gave me goose bumps. #WhyWeDoResearch seeks to help give people a voice to say why they do what they do therefore I was delighted that Irenie agreed to share her story as a blog and am extremely humbled to be able to promote this alongside the campaign. 
0 Comments

    Introduction to our guest blogs

    We are delighted to host guest blogs from our fantastic followers. Blogs come from patients, members of the public & from healthcare professionals. They focus on why people are involved in research, what it means to them and what they would like to see happen in the future of research.

    Occasionally, we also host 'Spotlight on...' months - in these months you will see a blog per week from patients, public and staff centred around a specific topic / illness / disease area. We also host a tweetchat on the topic during the same month. Follow #whywedoresearch on twitter to keep up to date with these.

    If you would like to guest blog for us, please contact @ClaireW_UK or @keeling_michael via twitter

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