Category Archives: Publicity

Help Us Make Birdshot a Priority For Research!

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We are re-posting this, as the survey ends on 31 July, and we need as many responses as we can get, in order to make sure that Birdshot becomes a priority for research.  If you have not already done so, please complete this survey.  It is quick and simple to do.  We have posted some ideas about what kind of research is needed into Birdshot at the end of this post, to help stimulate debate, and give you some ideas.  Remember that the more people who respond mentioning Birdshot, the more likely we are to get Birdshot as a priority!

The Sight Loss and Vision Survey is a joint initiative between Fight for Sight, The Royal College of Ophthalmologists, The College of Optometrists, the National Institute of Health Research, RNIB and The James Lind Alliance.  It has been set up to find those areas of research that have not yet been identified.  For us with Birdshot, this is really important, as we have a rare disease, and very little research has been carried out to date.  This is our opportunity to get Birdshot (and other rare, auto-immune forms of posterior uveitis) on the national agenda.  Because the survey will be completed by patients, it will have great credibility and it is hoped that funds can then be identified for some of the research needs.

The James Lind Alliance is a non-profit making organisation, funded by the National Institute for Health Research, which will oversee this initiative ensuring the exercise produces an unbiased result, with equal weighting being given to each of the participating groups – so your opinion really will count.

The Sight Loss and Vision Survey will allow you to identify your most pressing questions about the prevention, diagnosis and treatment of Birdshot.

The more Birdshotters that complete the survey the more likely we are to be able to influence the research agenda and receive valuable funding from the government for research into Birdshot – we really do need you to take part.

To complete the survey and learn more about this initiative please visit www.sightlosspsp.org.uk where you will find both the online survey and can request alternative formats – post/fax or telephone.

The survey takes less than 10 minutes to complete so please take this opportunity to represent Birdshot and help change the future of eye research.

Thank you!

1.  What causes Birdshot?

2.  Which part of the immune system becomes disregulated?

3.  How do you re-regulate the immune system without damaging the body?

4.  How can we find less toxic medication that does not adversely affect mental health and quality of life, but preserves vision?

5.  How can we ensure early detection of Birdshot to prevent sight loss?

6.  What are the genetic links and why are several generations of some families affected, and why does it seem to affect mainly Caucasians?

7.  Why is there a ‘spectrum’ of Birdshot?

8.  Why do different people respond differently to different medication regimes?

9.  Why is Birdshot treated systemically with toxic medications which adversely affect mental health and quality of life, when it seems to be confined to the eyes?

10.What does the link to HLA A29 mean in relation to treatment?

11.  What is the risk/benefit analysis of toxic treatment to prevent blindness versus blindness?

12.  What are the long term costs to health and social care of blindness which could have been prevented through the use of off license or off label medications?

13.  Is Birdshot best treated by ophthalmologists or should a clinical specialism of immunology be developed?

14.  Can holistic therapies such as acupuncture, meditation, hypnotherapy help in preventing or treating Birdshot?

15.  Can supplements, such as vitamin D or other therapies treat Birdshot less toxically than current medications?

 

Announcing Birdshot Day 2012 DVD

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Birdshot Day March 2012

Hot News!  The 2012 Birdshot Day DVDs are now available.  They contain all the talks, all the question and answer sessions and individual interviews with patients and professionals.  Compulsive viewing for those of you who were not able to attend the day, and for those of you who want to relive the day.

We are trying to provide the DVD free of charge, but we do need a donation to cover the cost of production, postage and packing.   To order your copy, please email us at info@birdshot.org.uk giving us details of where you want it posted.

Donations for the DVD can be made online through our web page on the B My Charity button:

Donate button

or if you are overseas, via Paypal on our website:

(yellow button below)

Thank you.

The talks and interviews (but not the hour long question and answer session)  are also available online on You Tube at Birdshot100

 

Lorraine’s Birdshot Story

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Lorraine is the BUS fund-raiser and was diagnosed with Birdshot in September 2011.  She was asked to tell her story to her local gym/club and they have published it on their web-site.  Wonderful – not only does it help us raise the profile, and hopefully get some donations in for the Carrot Walk, but it also means that Birdshot stories are now speeding around the world.  If anyone else can think of a way to get their stories into local or national media – please, please do.

Here is Lorraine

And here is the article Lorraine wrote for her local club:

I have been a member of the Park Club for over 5 years now and spend a huge amount of time in the adult bar and restaurant…I mean the gym!! The club has become such a big part of my family’s life over that period and never more so than now.

Last September I was diagnosed with an incurable eye disease called Birdshot Chorioretinopathy. This is a very rare and potentially blinding form of posterior uveitis which has a profound effect on your eyesight. It has changed my sight and my life in many ways over the last few months. I had pretty good vision up until June 2011 and then, within a few short months, I was unable to see well enough to cross the road safely on my own.

Birdshot is a very strange disease, it is quite mysterious and its progress and outcome vary enormously with every patient. It is often misdiagnosed and I feel really lucky that I live near an amazing hospital like Moorfields which has become my second home (after the Park Club!). The treatment for Birdshot is basically a lot of very toxic medication. I take more tablets now than I ever thought physically possible…I had to get over my tablet-taking phobia very quickly with this illness! I take very high doses of steroids and immunosuppressant drugs to control the inflammation in my eyes and to shut down my immune system. This, hopefully, will help to preserve my eyesight.

Since I started taking all these drugs I’ve seen some improvement in my vision and although I had a relapse in January I think I am making progress. This is something that unfortunately isn’t going to go away but will be part of my life forever. I’m trying to spend more time in the gym and doing classes because it’s really important to keep fit and strong when you are taking these kinds of drugs.

I’ve also become involved with The Birdshot Uveitis Society who have helped me a lot. In September I am taking part in the London Carrots Nightwalk for Fight For Sight. The aim of the walk is to raise money for a Birdshot Biobank to help fund research into this disease. I believe this is where the answers will lie. We need to find out why people get this eye condition and what can be done to treat it in a more effective way.

We are quite a rare group, us “Birdshotters” and our numbers are small. A Birdshot Biobank would really aid researchers and scientists interested in finding out more about the condition and would also help with devising better treatment options for sufferers.

Some fantastic friends from the Park Club are joining me on this walk and I think we will make a difference to the outcome for people like me. If you feel able to join us on our walk or to donate to this very personal cause, I would be so grateful! You can donate via my JustGiving page at http://www.justgiving.com/Lorraine-O-Mullane

Thanks for taking the time to read my essay!

Lorraine

Birdshot Day on You Tube

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A short video of the Birdshot Day of 3 March 2012 has been posted on You Tube.  It gives an overview of the Day, and is only 4 minutes long, so makes easy viewing!  It is in HD, so really nice quality.  Take a look everybody, and if you like it, please like it!  And see if you can spot yourself, if you were there on the Day.

It can be found on Youtube by following the link below.

http://www.youtube.com/watch?v=MoLMSewDNmo

We are busy finalising the long DVD which will show the whole day, and this should be available in a couple of weeks.  We will let you know when it is ready.

Have fun viewing.

 

How are patients involved in licensing new medications?

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On 13 February 2012, Genetic Alliance UK published a report of a Citizens Jury’s findings.  The Citizens Jury was tasked with deciding on the balance of risk versus benefit of new medications for serious and rare diseases.  We are hoping that this report will influence the regulators for those of us with rare, serious diseases, who struggle to find appropriate medications.  The regulators often take a very cautious view about the risks of medications – however, many of us with serious conditions are prepared to take risks (as long as we are fully informed) if the benefits are that we can continue to live a good enough life.

This is something we, with Birdshot, already face.  We know that our medication regimes can be toxic, but we make the fully informed decision to take medication in order to preserve our sight.  That is our choice.

Rea was a member of the Citizens Jury – here she is with her fellow jurors.

More information on the Citizens Jury can be found at: http://www.geneticalliance.org.uk/latest-news.htm

Here are the findings of the Citizens Jury:

1. Regulators should include psychosocial factors in their decision making – Jurors would like to see regulators broadening the range of issues which they consider when deciding whether to approve a new medicine. Jurors have generated a list of 25 psychosocial factors that are important to them, to be included in the assessment of risks and benefits of new medicines.

2. Regulators should be more permissive for those treatments for people with rare and/or serious conditions-Because of their often unique circumstances, patients with rare and/or serious conditions may well be willing to take greater risks than the system currently allows. They should be given that choice.

3.  Patients should be more involved in all stages of the process, from setting the research agenda, to post-marketing authorisation decisions – Patients’ experiences and preferences should be included at all stages. Patient representatives (such as patient group members) should be supported to be joint decision makers, alongside clinical experts, throughout the process.

4. Patients should be better supported to make their own decisions – Decision-making about new medicines is challenging, but possible for most patients provided they are given adequate information and support? (or something like that). Jurors generated a list of questions to help guide patients when deciding on their own treatment options.

Birdshot Chorioretinopathy diagnosed in Doc Martin ITV drama

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A few of our members were watching Doc Martin on ITV when actor Martin Clunes diagnosed a case of Birdshot Chorioretinopathy. (24th October 2011)

Here is a description which we received by email from one of our members in case you want to see for yourself via ITV iplayer.

“The relevant bit occurs around 37 mins into the 46 min episode. Mrs Dingley, played by the splendid Anne Reid, falls off her bike. Doc Martin (Martin Clunes) appears, looks in her eyes to check consciousness, and then, with a simple ophthalmoscope that doctors and opticians use to check the retina,  says he can see spots on the retina, asks about shapes moving around in the eyes and then declares that as well as arcus senilis, she has birdshot chorioretinopathy. ‘At least with steroids and immunosuppressants, you won’t go blind’ he says.   The Anne Reid character is glad about that, as she has to look after her cat sanctuary.

Now, wouldn’t it be good if every optometrist and ophthalmologist in the land could make a birdshot diagnosis out-of-doors, with minimal instruments, and do it straight away with no other tests and with the patient taking it all so calmly?

I’m not sure how long the episode is on www.itv.com/itvplayer – perhaps seven days.

Perhaps Martin Clunes and Anne Reid could give some publicity to the Birdshot Day!”

Rea is already in touch with the programme makers to see if she can find how the Birdshot reference came about.  Certainly for people who suffer from Birdshot Chorioretinopathy all publicity is  good publicity and we are delighted that the eye condition has been highlighted on  the Doc Martin programme.

I checked out our member’s timings and it is pretty accurate if you don’t want to watch the whole episode but are intrigued to see the Birdshot mention.

Annie

Royal College of Ophthalmologists News writes….

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URL:   RCO NEWS  A short piece about the “Birdshot Uveitis Society”, the “Birdshot Day,” the “Birdshot Day DVD” and the forthcoming “Birdshot Research Network Meeting” was included in the latest edition of the RCO News.  This newsletter is circulated to  a large number of ophthalmologists.  As it has a circulation list of over 1,000  it is a good place for publicity, as it will undoubtedly help us to get Birdshot Chorioretinopathy better known, across the wider ophthalmology community.

We are delighted to receive this publicity and very much hope that Ophthalmologists interested in Birdshot get in touch with us to find out more about the Birdshot Research Network Meeting which is taking place in Birmingham on the 18th October.

There are only a limited number of spaces so if you are interested in becoming involved and want to attend this meeting you need to contact us quickly before all the places are taken.

Annie and Rea

 

 

 

 

Quinn Wilson Associates raise Money for BUS

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 Kerry Quinn is an amazing, energetic and inspirational person who constantly thinks of others.  She set up Quinn Wilson Associates which specialises in using digital and social media to market organisations to help them become more successful.

On Friday 23rd September, she organised a small social media event at my local art gallery, Lemon Grove in Chiswick, London, and I was invited along.  I have to say I was in total awe of Kerry and her stunning social networking skills.  She is one of the nicest people I have met, and she spent a lot of time with me, giving me advice about how to use digital and social media to improve BUS.

Even better, she held a raffle and decided that all the proceeds would go to BUS – what a wonderful person!

The raffle prizes were a voucher for a hair cut and design at Tony & Guy (thanks to Tony & Guy, Chiswick for donating this) and a wonderful book of paintings by Fabian Perez, a very prominent artist (donated by Silvana Bedford at the Lemon Grove Gallery, Chiswick)

The raffle raised £124.  This adds to our growing pot of money for our next Birdshot Day on 3rd March 2012.

The whole event that Kerry organised was really helpful, as I met so many people who have offered their time for free to help me learn some new skills. and Kerry has said she will think about whether there are other ways in which she can help BUS.

If you want to find our more about Kerry, her website is at

http://www.quinnwilson.co.uk

And if you want to find out more about the Lemon Grove Gallery in Chiswick (Silvana has been so supportive of me, particularly when I was at my worst on medication and struggling to even get the shopping done – Chiswick is just full of wonderful people) her website is at

www.thelemongrovegallery.co.uk/

Team Birdshot just keeps growing and growing!

While I was at Kerry’s networking meeting, I met a solicitor, Eilish Adams from Adams Law and she told me about an interesting scheme called WillAid where, in the month of November, you can seek out a participating solicitor and make your will in exchange for a donation to charity.  You can find out more about this scheme at  http://www.willaid.org.uk/

Rea

BUS moves to the next level

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We are very excited to announce that BUS is growing and developing.

Until August 2011, BUS was part of the Uveitis Information Group (UIG), a charity working for people with all forms of uveitis.  However, this arrangement became difficult to maintain because of rapid changes in the NHS (particularly in Scotland where uveitis services have developed at a faster pace), and changes in the charity sector.

UIG AND THE NEW SUN

Because of this, UIG will focus on Scotland and will evolve into becoming the Scottish Uveitis Network (SUN) – an organisation made up of NHS staff and patients.  Phil Hibbert will be leading these developments in relation to patient support in Scotland and SUN will work with all forms of uveitis.

BUS DEVELOPMENTS

These developments give BUS the opportunity to re-focus and establish itself as a charity in its own right.  There are a number of steps we will need to take but we have already fulfilled the first one of becoming a limited company and Birdshot charity. The formal registration should be complete by the end of the year.

BUS will work with all Birdshot across the UK, and expand its international links and expertise. It will continue to work in partnership with sister Birdshot organisations in France and the US.

We have been so very lucky to get help from two people who are involved with Birdshot and one person who is involved with PIC (Punctate Inner Choroidopathy – another rare white dot syndrome).

Peter Edney (far left), our treasurer,  is a practising accountant, and is helping us become a registered company/charity.   His wife, Janie, has Birdshot.

John Hall (left) has Birdshot and is a very successful business man.  We are really lucky to benefit from his business knowledge and experience.   He is helping us to plan for the future of BUS.

David Bethell is also part of  the BUS team.  As many of you may know David is our graphic artist and has been involved with BUS virtually from the start.  He designed our fabulous logo and continues to come up with imaginative ideas for our posters and Birdshot Day leaflets.  David also has Birdshot.

Dave Stead has PIC and runs a specialist PIC information and support website at: http://www.pic-world.net/.   (PIC is a rare form of auto-immune posterior uveitis, which leads to punched out white spots at the back of the eye).   Whilst still retaining its own identity, the PIC Society will be part of the new BUS charity.  This will mean that in addition to providing specialist support for people with Birdshot, Dave will provide specialist information and support  for people with PIC under the BUS umbrella.

Olivia’s Vision

In addition, a new charity for people with uveitis in England, Ireland and Wales has been set up by a mother of a child with uveitis. This new charity is called Olivia’s Vision and can be found at www.oliviasvision.org

NATIONAL ORGANISATIONS WORKING WITH UVEITIS

The three new organisations working with uveitis in the UK (BUS, Olivia’s Vision, SUN) will liaise to make sure that people are directed to the appropriate place for help.

THE FUTURE

At BUS, we have already been successful in raising the profile of Birdshot, attracting members with Birdshot and professionals working with Birdshot, and setting up a research network. The new BUS will give us greater strength to continue these activities.  We also hope to develop a similar response for people with PIC.

We will keep you informed of any developments, but please be assured that for all of you who are members of BUS, whether you have Birdshot, are a family member or a professional working with Birdshot, the only changes you should notice is that we are better organised and have even more impact!

The First Birdshot Day goes Viral!

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Moorfields Hospital and UCL (University College London) Institute of Ophthalmology run the Biomedical Research Centre for Ophthalmology (BRC). This centre comes under the National Institute for Health Research (NIHR), so is very influential and is part of the NHS system.

The aim of the BRC (a happy coincidence that the acronym suits Birdshot so well) is to be the leading website providing information about new diagostic methods and therapies relating to the eyes,  whether they are developed by themselves, or in partnership with other research centres, private companies or charities.

It is therefore most encouraging to see that the 2010 Birdshot Day is featured in great detail on a number of the site’s pages. Let’s hope it bodes well for future research into our particularly rare and hard to treat eye disease. The link below takes you to the first page but there are four other pages: Art Project, Outcomes and Reflections. (See the red links in the middle of the page that this link takes you to).

http://www.brcophthalmology.org/Events/BirdshotDay2010.aspx