HLA-A29 and Birdshot Chorioretinopathy

The link between HLA- A29 and Birdshot Chorioretinopathy is one that interests many people and the paper published by:  Brézin AP, Monnet D, Cohen JH, Levinson RD, on this subject asks the question:

Why do people of European descent tend to get Birdshot, whilst other ethnic groups who also carry the HLA A29 antigen do not?

The paper explains that there are two different subtypes of HLA29A:- HLA29:02 is most frequent in caucasians, whilst HLA29:01 is most frequent in Asians.

It used to be thought that the disease only appeared in people with the HLA-A29:02 version of the antigen.  The paper tells us that is no longer a valid argument.   It suggests that another factor, probably not HLA linked, is either protective in Asians and in Africans or, alternatively, triggers an autoimmune reactivity that is possibly present in Caucasians of european descent and absent in Asians and in Africans.

We might start to make progress if scientists can find the answer to what this might be.

We are trying to get hold of the full research paper so that we can review it in detail.


Concessionary overnight rate at Grange St Paul’s Hotel for Birdshot Day

The Grange St Paul’s Hotel have kindly offered us a concessionary rate on the 2nd, 3rd and 4th of March 2012 of £109 plus VAT including a continental breakfast (per night) single or double occupancy.  Please book before the 5th February to be sure of getting this rate.  Please quote “Birdshot Day” when ringing up the hotel reservations department on 02 7074 1000.

This means that if you fancy a weekend break or a night in London at a luxury 5 star hotel, as part of your Birdshot Day experience, there is fabulous accommodation available at  very reasonable rates for central London.

Please do get in touch with us for details of who you should contact about this.

Thank you Grange Hotels !

Happy Christmas everyone!

Annie and Rea



Next Birdshot Day – book your places now!

We are delighted to be able to invite you to our 2nd Birdshot Day on Saturday, 3rd March 2012.

We will be launching the National Birdshot Research Network and, if we can raise the funds, the National Birdshot Bio-bank. We hope that this will be the start of research into the causes, prevention and treatment of Birdshot. On this Day, you will find out how you can play your part in developing the research, and you will be able to network and socialise with our ‘Birdshot Community’ – made up of professionals, people with Birdshot and family members.

We know that when you attend for your appointments, there is often not enough time to ask all your questions, so we are focusing on allowing you to:

  • Meet experts in the field of Birdshot
  • Meet other patients with a Birdshot diagnosis
  • Ask questions about Birdshot
  • Ask questions about medication
  • Find out about new treatments and research

A two course buffet lunch, tea and coffee will be provided.

Please register on line to reserve your place, or print off and fill in the form found here and send it to us at PO Box 64996, London SW20 2BL.   The Birdshot Day leaflet can also be downloaded here as a word document or as a Birdshot Day Registration leaflet.  You are very welcome to bring a member of your family or a friend with you. We welcome everyone who attended the last event and we hope that many others who want to be involved in research or learn more about Birdshot will attend too.

As before this event is being organised by BUS, Narciss Okhravi and key people from Moorfields. The fact that we have been able to organise our second day and formed the National Birdshot Research Network  is testament to the hard work and commitment of these people.

We are most fortunate to have the continued  help and support of Professor Miles Stanford of Guys and St Thomas’s NHS Trust, Mr Carlos Pavesio, Miss Narciss Okhravi and Mr Mark Westcott from Moorfields Eye Hospital, Professor Andrew Dick of Bristol Eye Infirmary and Professor Phil Murray of Birmingham University.

We very much look forward to meeting you all on the 3rd March 2012



Email: info @ birdshot. org.uk

Book your places now!

As before, the conference, including lunch, is free, as we have managed to obtain sponsorship but we do require a £20 refundable registration deposit (plus £1 non-refundable administration fee to pay for postage and Paypal fees) – your registration fee will be returned when you attend the Day, but if you choose to donate your registration fee to help BUS develop the next Birdshot Day, we very warmly welcome this. You can pay your registration fee by using the button below (debit and credit card & PayPal), or by sending a cheque by post to BUS.

If you are claiming benefits or on a pension we will waive the deposit as we do not want to prevent people attending due to financial constraints.


Meditation/Mindfulness – the health benefits

Forget the hippy dippy image.  Growing scientific research has shown that meditation can help with pain relief, lower blood pressure, regulate your immune system and even slow down the ageing process.  It is also a practical tool for dealing with stress, anxiety and depression.”

Some of our BUS members have told us that they experience depression (either because they have Birdshot or because of the side effects of medication), high blood pressure (either due to stress or as a side effects of medication) and pain in their joints and eyes (possibly a side effect of medication).   Many of our female members (including Rea and I) have complained about our ageing, dry and wrinkly skin (a side effect of medication).

Because of this, we thought it would be useful to introduce you to “Mindfulness”.  It is a simple practice which might just help you with some of the issues resulting from taking steroids, immunosuppressants, and concern about losing visual acuity.

Writer Tim Parks tells us more:-“In 2004 a form of meditation called mindfulness was recommended as a treatment for recurrent depression by the National Institute for Health and Clinical Excellence (NICE) and has been show to halve relapse rates.  Mindfulness uses a combination of meditation, breathing and yoga techniques helps people focus on the present moment and de-stress their thought processes. 

Meditation and mindfulness are the same thing,  you practice meditation to become more mindful.  American research has shown that people who meditate for 20 minutes a day had a higher pain threshold after just four days.  And scans have shown that regularly practicing mindfulness can shift activity from the pessimistic right side of our brain which is associated with fear, anxiety, and depression to the optimistic left side which is responsible for upbeat, positive emotions.”

Some of our members have told of the positive benefits they have received from meditation and mindfulness.   This may be something that could help you – AND, it does not involve taking toxic medication!

There is a four week course which is run on line by the Mental Health Foundation which costs £40 and a book which you can buy for just £5.00 The Mindful Manifesto by Dr Jonty Heaversede and Ed Haliwell which is a practical introduction and guide.”

You can read more about the experiences of Tim Parks is his book where he talks about how Mindfulness has changed his life  “Teach us to Sit Still”  – available from Amazon for just £5.00,  or you can even get started  for nothing by trying out this short Vipassana-based exercise which Tim Parks describes in detail below.

Don’t worry, Tim Parks says.  “You cant know what you’re aiming at until you get there, so don’t aim at anything.

  • Set an alarm for 10 minutes or however long you plan to sit
  • Sit in a position you can hold, hopefully with you back straight
  • There are no mantras, imaging or breathing techniques in this medication.
  • Close you eyes and mouth and feel your breath as it crosses your upper lip, entering and leaving your nose.
  • Maybe be you feel nothing.  Don’t be anxious – just bring your mind back every time it wanders off.
  • Don’t try to regulate your breathing.  Wait for it to come.  It will.

Once you can hang on to your breathing for a minute or two, (it might take a few sittings), use the concentration to go off and explore your body bit by bit.  The important thing is to keep the mind moving.  Painful or pleasurable, don’t linger over any one part of the body.

However futile this all sounds, follow the instructions faithfully and things will eventually begin to happen.  Above all, however long or short a time you’ve decided to sit for, accept that you are there for the duration.  Learning not to worry how much time is left is a great step forward.”

It is time I took some of my own advice, and gave myself an on-line mindfulness course for Christmas to see how it might help me.

If anyone has already tried Mindfulness, we would really like to hear your experiences.



Date confirmed for 1st London/SE Birdshot friends meeting!

Thank you to those of you in the London/SE area who have already expressed an interest in meeting up – everyone is welcome!

We are pleased to confirm that the 1st meeting for Birdshot friends in the London/SE area will be on Saturday 21st January from 1.30pm at St John’s Hall, New North Road, London N1 which is close to Moorfields.

Further information will be provided nearer the time but please keep the date free in your diary.

If you let us know from where you will be travelling we will try to advise the easiest route.

We look forward to meeting you there!



Easy Fundraising continues to raise funds for BUS

Birdshot Uveitis Society supporters raised £118.43

with easyfundraising & easysearch!

There are 13 of us signed up raising money via Easy Fundraising and we have just received a cheque for £37.68 for doing our on-line shopping via the Easy Fundraising website.  This brings the total raised since we signed up about a year ago to £118.43.

We’d like to thank the people who have decided to help us via Easy Fundraising.  It’s simple, painless and it doesn’t cost you a penny more than you would otherwise be spending on yourself and your friends and families, especially at this time of year when you are Christmas shopping.

The Easy Fundraising site  is an excellent, easy, on-line way to help raise money for future research and Birdshot days, while you do your normal on-line Christmas shopping and it doesn’t cost you anything extra. Retailers such as Amazon, Next, Argos, John Lewis, Comet, iTunes, eBay, M&S  and HMV, Clarkes all give money when you shop-online via Easy-Fundraising. You shop directly with the retailer as you would normally do, but if you sign up to http://www.easyfundraising.org.uk/bus for free and use the links on the easyfundraising site to take you to the retailer before you shop, then a percentage of whatever you spend comes directly to us at no extra cost to yourself. This service is FREE to use and will give you access to hundreds of exclusive discounts and voucher codes, so not only will you be helping us while you buy your Christmas presents, you will also help to save money yourself

Educational Support Day – Manchester 9th November 2011

Here are the details of a local meeting that Adrian Brooks is organising in Manchester.  We thought that some of our Birdshot members might like to go along and meet up with others in the area.  Adrian’s meeting is intended for glaucoma sufferers, so parts of it may not appear to be totally relevant to you at this moment, but some of the issues that may concern many members will be covered. It all depends on where you are with your Birdshot  journey.

Please do get in touch with Adrian to let him know if you would like to attend because he will need to have some idea about how many people will be coming.

Thank you so much Adrian for extending this invitation to our members.

Annie and Rea

Wednesday 9th November

  At:  The Boardroom at Henshaws, Old Trafford, Manchester M16 0GS

11.00pm: Coffee and Introduction – Adrian Brooks

11.30am : Instilling Eye drops – Discussion

12.00am : Preventing Falls

Mr Donal O’Connor Clinical Exercise Specialist

1.00 – 2.00pm: Lunch “Hot pot” or Sandwich selection

2.00pm: Legal issues of Visual Impairment

Mr Stephen McCann & Ms. Caroline Pinney, Solicitors

3.30pm Meeting Close

  • Don O’Connor, is experienced at working in healthcare as a clinical exercise specialist. He has enabled many people to improve mobility simply and safely.
  • Stephen McCann and Caroline Pinney work as solicitors and specialize in legal issues of older people and those with long term conditions.
  • Adrian Brooks leads the Glaucoma group at Henshaws

We are grateful to Henshaws for supporting all meeting costs.

Adrian Brooks        Telephone : 07925 962 184

Calling all South-East/London based Birdshot Friends!

A number of us met up recently to discuss the forthcoming Birdshot Day and we all found it so useful to be able to talk with other people with the disease and swop experiences and advice that we’ve decided to set up a local group for those around the London area. The first meeting is planned for a Saturday at the end January/early February 2012 somewhere near to Moorfields. Date and venue to be confirmed nearer the time but if you are keen to attend please e mail us at southeast@birdshot.org.uk. We look forward to seeing you there!”


Sue, Lesley and Sandra

Flu shots – it’s the time of year

Have you had your flu shot yet? If you are on immunosuppressants, regardless of your age, your GP should be offering you a flu vaccination as a matter of course. I speak from experience when I say that this does not necessarily happen.

I know there is debate amongst some of our members, but I for one, have never had any ill-effect from having the vaccination and I certainly haven’t caught flu either. I had mine last Tuesday.

This is something you should discuss with your GP because it may depend on what medication you are on and other health issues but we believe it’s an option which is not very likely to have a serious ill affect, but obviously it is up to you.