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

 

REA AND ANNIE

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.

Registration

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.

Annie

 

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

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.

Annie

Planning the Birdshot Day of 3rd March 2012

13 of us met up on Saturday 22nd October to plan the agenda for the next Birdshot Day on 3 March 2012.  We wanted to say a huge thank you to Sandra (who is planning to hold a fund raising stall on the Day, selling her handicrafts, Janie, Julia (who is offering us help with our administrative work), Sue W, Ann, Lesley (who are also offering help with our work), Hilary, Colin, Gail, David B.

We explained that we are trying to set up a  Biobank to collect and store samples from each person with Birdshot so that research can be carried out by clinicians and researchers throughout the UK. Most people who attend regional centres could have their samples taken at their regional centre.

For those people who do not attend regional centres, (we think there may be about 40 people), we are hoping to take their samples at the Birdshot Day, if we manage to progress the Biobank in time.

We, therefore, need to accommodate the taking of these samples within the Birdshot Day, without disadvantaging these people and making them miss the talks.

OPTOS will also be there. They are one of our sponsors for the day. They are coming along with their imaging equipment and a technician. We hope that they might be able to image every single birdshot person’s eyes on the day. It is quick, easy and painless takes about 30 seconds an eye, and it is fun. (We know we had it done at the London Euroretina this year). This will give a snap shot of all the eyes there on the day and will be very useful information for our doctors and clinicians.

We agreed that we would have an ‘open’ morning at the Birdshot Day with a variety of activities and keep the talks for the afternoon.

There were a lot of suggestions for the morning and afternoon, and we have tried to incorporate all views from our meeting, as well as all views expressed through feed-back from the previous Birdshot Day.  Here is what the timetable looks like following all feed-back.

If any of you have further suggestions for stalls, please let us know.  More importantly, if any of you have any contacts to staff these stalls, please, please get in touch with us.  We need all the help we can get!

Time
10 am – 1.00 pm (including tea and coffee) General Activities including networkingTaking samples of boods/DNA, etc for those people who do not attend regional centres Stalls: (Please note that these are all proposals and we need to do some work to see if we can get hold of these people – anybody able to help?) 

Fund-raising staffed by Sandra Foot to raise money with her arts and crafts  anybody else want a fund-raising stall?

BUS staffed by Annie and Rea to offer information and advice

Professionals  staffed with ophthalmologists and uveitis nurses so that people can ask questions and get adviceExpert patients for advice information and support any of you feel you are expert patients who can advise?

Expert friends, families and carers to provide information and advice.  Anyone an expert carer/friend/family member?

Regional stalls – Where we have already set up regional Birdshot networks (e.g. London) – information on those networks and how to join

Information about the National Birdshot Research Network and the Birdshot Biobank

How to take your medication – information on how and when to take your various different medications to make them most effective – a pharmacist – who?

Low vision aids including specialist glasses

Driving with Birdshot information on DVLA requirements and driving options – Lesley F

Registering as partially sighted benefits and disadvantages of registering – who?

ipads and kindles so that people can see whether using these will help them read books, etc – John H

Eye drops Scope Ophthalmics for those people with dry eyes and belpharitis  – Rea

Nutrition information on diets and nutrition to keep us healthy – who?  Anyone able to help with this?

Supplements  information on supplements and what supplements might help and how to take them with your current medication regimes – Nick and Caroline

Cosmetic surgeon who is qualified to advise about whether various procedures can be undertaken while taking our particular medication – who? Anyone able to help?

RNIB – information on services offered – Rea

AGNSS and SCG  The specialist government agencies that decide on what medications people with rare diseases should have available to them – Rea

Bates/Alexander and Head massages Lizzie May

Chiropractic – Mikael Petersen looking at your posture and what may help

Complementary approaches – mindfullnessacupuncture, ayurvedic medicine, etc – who?

Vision simulator

RCO Bosu

Optometrists – invite your optometrist

National Voices

The Eye Care Trust

 Olivia’s Vision

 Vision 2020 (UK) – Mike Brace

Audio Books where can we get these from?

Susan Piper’s paintings

Plenary Sessions – if we have a couple of small rooms available, there are requests for patients to tell their stories to those who want to hear other people’s stories and for people to talk about self-help

1.00 pm – 2.00 pm Lunch
2..00 pm – 2.30 pm The latest news on Birdshot – latest research, latest medication regimes Team of specialists involved in National Birdshot Research Network
2.30 pm – 3.00 pm Introducing the National Birdshot Research Network and the National Birdshot Biobank Team of specialists involved in National Birdshot Research Network
3 pm -3.30 pm Bones, DEXA scans and keeping your bones healthy

OR A patient Story

OR  Nutrition, anti-inflammatory diets and supplements

Dr John Armitstead from St Mary’s Paddington

We have had lots of patients offering

Who?
3.30 pm to 4 pm Tea
4 pm to 5 pm Panel Session – professionals and expert patients answer your questions Team of specialists involved in National Birdshot Research Network Rea Mattocks and Annie Folkard

 

Setting up Regional Networks

A group of us met on Saturday 22 October to try and plan the Birdshot Day of 3rd March 2012. It was such a good meeting, and everyone thoroughly enjoyed networking, comparing medications, comparing symptoms, having a laugh, etc, that it was decided to try and hold regular socialising events. Sandra F, Sue W, Ann and Lesley decided to set up the London Regional Birdshot Network (i.e. all those people who attend Moorfields, St Thomas, Croydon and who reside relatively closely to London).

Colin and Gail decided to set up the Hampshire and surroundings Regional Birdshot Network (i.e. all those people who attend Southampton, Winchester and surrounding hospitals and who reside relatively close to these areas). They have some exciting plans about seeing whether the main consultant can attend the first event.

We also are in touch with Adrian in Manchester who in his spare time, supports people with glaucoma via a local support group. Annie met him at the recent Moorfields Glaucoma day. Adrian would like to extend an invitation to our Birdshot members to attend the meetings he organises as he thinks that some of the talks he organises may well be relevant. There next meeting is on 9th  November  and full details can be found here.  Please do get in touch with Adrian if you are interested in attending.

It would be really good if anyone in Bristol or Birmingham or Leeds or Scotland or Ireland or Wales or Newcastle would like to set up Regional Networks.  Please let us know if you are inspired to so something by the action that Colin, Gail, Sandra, Sue, Ann and Lesley are taking.  We would love to have coverage right across the UK!

If you are inspired, we can tell you what is being planned for London and Hampshire and Manchester. Please email us to let us know of your interest.

Long live Team Birdshot – it just gets better and better!
Rea