Author Archives: Annie

Birdshot or Not?

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We recently posted a news item about the importance of being sure that the diagnosis of Birdshot is the correct one.  This is because each different eye condition requires different treatment.  For those of us with Birdshot, we really need early and accurate diagnosis and speedy treatment designed for Birdshot (and not for some other uveitic eye condition).

There are several eye conditions that produce the ‘typical’ cream coloured lesions that are so characteristic of Birdshot.  We have just come across another case which clearly demonstrates why it is so important to not immediately diagnose people with Birdshot if they present with these cream coloured lesions.

This case involves a 9 year old girl who presented at the department of ophthalmology in Samsun, Turkey.  On examination, she had numerous oval, irregular cream coloured choroidal lesions which resembled Birdshot lesions.  However, these doctors went on to test further and diagnosed this girl with sarcoidosis.  They wrote the case up to demonstrate how important it is to think of all the possible diagnoses, when seeing ‘birdshot type’ lesions.

The lesson is that not all ‘characteristic Birdshot lesions’ mean that you have Birdshot!  This case illustrates really well why proper diagnosis is so important.

Read the full article at: http://journals.lww.com/retinalcases/Abstract/2012/00610/Sarcoid_Uveitis_Simulating_Birdshot.3.aspx

 

 

 

 

 

Launching the Human Ocular Immunology Consortium

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On Tuesday 22 May, Rea and Annie were privileged to be invited to the launch of the Human Ocular Immunology Consortium.  This Consortium is a partnership between the National Eye Institute (NEI) in the United States and the NIHR Biomedical Research Centre in the UK.  Researchers from London, Bristol and Washington will be developing joint research programmes in the field of Ocular Immunology.  This is really exciting, as it gives us a much wider group of experts who can look into the causes of, and better medication for Birdshot.  It also opens up the possibility of having an international biobank for Birdshot and other posterior, auto-immune forms of uveitis.

The launch was introduced by Professor Peng Khaw  (Director of Research and Development, Moorfields Eye Hospital NHS Foundation Trust and Director of NIHR Moorfields Biomedical Research Centre and President of ARVO – the Association for Research in Vision and Ophthalmology).  For those of you who attended the Birdshot Day in March of this year, you may remember that one of our US members, Doris Lapporte, asked why there could not be an agreement for Birdshot research across the UK and the US, as US Birdshotters were missing out.  Peng Khaw referred to this in his opening remarks – he then went on to say that we had been listened to!   Well done Doris!!  Peng has always been a strong supporter of the Birdshot Uveitis Society and the Birdshot Days and he kindly provided the narrative on our 2010 Birdshot Day short film.

We are so excited by this development, especially as it demonstrates how influential we can be when we Birdshotters work together.

 

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

 

2nd Birdshot Day, 2012 on You Tube

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We have now posted  all of the talks from the 2nd Birdshot Day held on 3 March 2012.  To access these, please go to You Tube and type in Birdshot Uveitis Society to find our channel.

Alternatively, click on the links below.

Birdshot Day Speakers

Mike Brace, CBE – The importance of the Birdshot Day

Miss Narciss Okhravi – Introduction to the Birdshot Day

Professor Andrew Dick – Patient, Clinician and Researcher Partnerships

Rea Mattocks – Introduction to BUS

Dr Graham Wallace – The Science of Birdshot

Mr Nigel Hall – Diagnosing, Testing and Monitoring

Professor Miles Stanford – Medication Options

Morning Question and Answer Session

Miss Dhanes Thomas – Introduction to Biobanks

Professor Phil Murray – The National Birdshot Research Network

Lorraine O’Mullane – Appeal for funding Birdshot Research

Julian Jackson – Fight for Sight and funding Birdshot research

Professor Will Ayliffe – Quality of Life Survey for Birdshot

Simon Denegri – Patient involvement in research (INVOLVE)

Mr Carlos Pavesio – Current research into Birdshot

Mr Alastair Denniston – Outcomes of research

Professor Glen Jeffrey – Vitamin D and Inflammatory Diseases

Interviews:-

Kathy Evans Royal College of Ophthalmologists – Talking about BUS

Niss Narciss Okhravi – The National Birdshot Research Network

Annie – Stable Birdshot

Ann – A family with Birdshot

Liam – A family with Birdshot

Helen – Birdshot in Israel

Sandra – Birdshot Effects

Colin – Birdshot Effects

Nick B – In Remission from Birdshot

Nick Collins – Living with low vision

Happy viewing everyone.

 

Food Poisoning and autoimmune diseases

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Many research studies have looked at the link between food poisoning and the onset of diseases, either shortly after the food poisoning, or later in life.

Last week, the Daily Mail published a short article by Fiona MacRae, the Science Correspondent, reminding us of this link. The article states that Salmonella, E Coli and other types of food poisoning may have lifelong consequence.  This includes the possibility of autoimmune diseases. The full article can be accessed at:

http://www.dailymail.co.uk/health/article-2117948/Food-poisoning-lifelong-consequences-bugs-linked-host-illnesses.html

This article got us thinking. We know of at least two people who had very very severe food poisoning shortly before the first Birdshot symptoms occurred (one of these people is Rea).

Can anyone else identify this as a trigger to Birdshot? Or can you think of any other possible trigger? It would be really helpful to start collating this information, so we can begin to identify whether there are common ‘triggers’ or a whole range of triggers.

Humberside Local Birdshotter Group and Fundraising

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Sue Bridge, a BUS member and a Birdshotter, is setting up a local group for people with Birdshot in the Humberside/Lincolnshire area. She had already set a date for the first meeting, but this had to be cancelled due to bad weather. She is now busy re-organising this first meeting.

Last weekend she and another Birdshotter set up a BUS stall at a local craft fair to advertise Birdshot and to raise money by selling hand made cards and crafts.

Below is a photograph of their stall – it really looks great. This is wonderful publicity for us – any opportunity we can get to help raise the profile of this rare disease helps us along the path of creating more interest and finding better treatments or a cure.

Many thanks Sue for your hard work. Any Birdshotters in the Lincolnshire, Humberside, Yorkshire wanting to attend the local group can email Sue@birdshot.org.uk She is really keen to hear from you.

 

Sue Bridge sells cards at local craft fair

Sue Bridge sells her hand-made cards at a local craft fair for BUS

 

 

 

Birdshot Day 2012 Feedback

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Team Birdshot

Above the team of helpers: member of BUS and family and friends, medical students, staff from Moorfields Eye Hospital and the NIHR BRC for Ophthalmology.  Thank you all of you.  We wouldn’t have been successful without all your help.

Below views of the audience (at times the auditorium was completely full) with nearly 200 patients and professional attending.

 

Follow the  links below if you want to see small galleries of  pictures from the day which were all taken by Meike Walcha, NIHR BRC for Ophthalmology at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology.

 

Birdshot Day 2012

Setting up and Registration

Speakers and people involved in the day

Mingling and mixing

Poster Evaluation

Exhibitors on the Day

Art Workshop

Raffle

Birdshot shock

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We wanted to share this very moving poem as we are sure it will resonate with most members who will know exactly the experience Margaret is talking about. Margaret was the opening BUS speaker at the 2012 Birdshot Day.    Thank you so much.

Birdshock

In that dark room,

chin cupped,

brow banded,

eyes dilated,

unmoving, dumb

before the bright slitted light.

‘Look up’

‘Look down’

‘To the right’

‘To the left’.

In that blurred

pink-tinged room –

silence.

‘Birdshot’.

Echoing gunshot.

Exploding fear.

Bird wings beat

on ribcage.

Mouth

birdcage-dry.

‘Birdshot’.

In that dark room

a life shot down.

Outside,

in the smeared world,

by the bus stop,

a bird sings.

Margaret Gilmour  February 2012

 

Blind people to lose millions

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The Government’s plans to replace Disability Living Allowance (DLA) with Personal Independence Payment (PIP) will remove tens of millions of pounds from blind and partially sighted people.

The criteria for the new benefit fail to recognise that sight loss is a serious disability and that you face extensive extra costs if you can’t see.

Act now to challenge this benefits shake-up that will hit blind and partially sighted people particularly hard.

RNIB’s website carries useful information about the government benefits shake-up and what you need to do to lobby against it by writing to your MPs.  To find out more visit the link below.

http://www.rnib.org.uk/getinvolved/campaign/yourmoney/personalindependence/Pages/PIP_act.aspx

 

‘Clusters’ of Birdshotters? Your help please

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With more Birdshotters registering on BUS, we are beginning to develop a better picture of Birdshot.  One of the interesting questions that keeps arising is whether certain geographical areas have more people with Birdshot.

At our Birdshot Day on 3 March, we were quite amazed to find two people with Birdshot from a very small town.  They were equally amazed!  We have also noticed that there are several members who live within a few miles of each other in an urban area and another ‘cluster’ in a northern city – again quite disproportionate to the probable total numbers of people with Birdshot in the UK.

We would really like to build up a more accurate picture of the geographical spread and we can only do this with your help.

We would love to have your postcode (if you have not already supplied us with it) so we can map where you live, and produce a more accurate map of the geographical location of us Birdshotters.  Your postcode will be kept totally confidential – it will only be used to help us identify your geographical location on a map.  Once we have mapped the UK, we will attempt to map other countries too, and begin to build up an international picture.

Please send your postcode to us at info@birdshot.org.uk

We thought you would be interested in seeing the google analytics map of the UK of visitors to the BUS website since September 2010. Of course, not all visits are from Birdshotters, but it certainly identifies areas where the strongest interest is.

 

Thank you in advance to everybody who sends us their postcode, so we can produce a realistic map of the UK to show geographical locations of people with Birdshot.  This will help to make sure research and services are targeted to meet our needs.