Birdshot local meeting in Market Rasen

The 1st Birdshot local meeting in the Lincolnshire area is going to take place on Saturday 11th February.    Market Rasen is a small market town on the edge of the Lincolnshire Wolds.  The town lies on the main road between Lincoln and Grimsby, the A46.   The informal meet-up is going to be held at the Red Lion from midday,  and will give people with Birdshot the opportunity to meet others with the condition in their local area.

We know of at least 4 members attending so far, and if anyone else with Birdshot lives close by and would like to link up with this group, please let SueB know on sue@birdshot. org. uk or email BUS on our usual email address and we will be pleased to pass on your details to SueB who is organising this meet-up in Lincolnshire.

This is a great local initiative and we are delighted that Sue has managed to organise this for BUS.

Join BUS and Fight for Sight on the “Carrot Walk” and raise funds for Birdshot Research

 

Fight For Sight (FFS) is a large charity that funds research into eye diseases. They have often concentrated on eye diseases that affect a large number of people. However, they are now looking at how they can help fund-raise for rare diseases and small charities.

FFS have offered us a place on the programme they are developing for small charities and rare diseases, subject to us finding enough volunteers to qualify.

Here is how it will work: FFS has set up a 15 mile London Nightwalk on 21 September, 2012, starting at 11 pm.  If BUS can find 30 people who are willing to pay £25 each to participate in the 15 mile night walk, and are willing to find sponsors for their walk (each person needs to be sponsored for at least £150), then all the money these people raise will be banked with FFS specifically for research into Birdshot.  This means that, if we manage to get our biobank set up, then researchers who want to use the biobank samples for research into Birdshot can apply to FFS for a small grant to fund the staff and other equipment for that research.  Exciting!!!

Before we can accept this offer, we need to be sure that we can find 30 people.  We are approaching all our members and all ‘Team Birdshot’ (which includes consultants, nurses, low vision experts, etc) to see if we can find the 30 people.

Could you let us know as quickly as possible whether you want to/are interested in undertaking this 15 mile London night walk?  FFS is expecting a very big turn out for this event, and we would really like to participate if at all possible.  21st September is a Friday night, so we could have the week-end to recover!  We might have to wear some silly clothes for the walk – maybe we can all go dressed as birds!

Please, please let us know as quickly as possible whether you want to be involved in this, so we can get back to Fight For Sight.

 

Rea

Birdshot Uveitis Society – Registered No: 1145349

Dear All,

We are delighted to be able to inform you that we received confirmation of our registered charitable status today. Up until now we have been part of the Uveitis Information Group. The UIG is registered in Scotland and is in the process of becoming Uveitis Information Group (Scotland) and concentrating on its work within Scotland.

Birdshot Uveitis Society is now registered in England and Wales.

We will continue to work closely with the UIG scottish charity and also link where appropriate with Olivia’s Vision which many of you will already know is a new uveitis charity registered in England and Wales, and set up by a parent of a child who has uveitis. It is worth pointing out that Olivia’s Vision supports all types of uveitis – not just uveitis in children and fundraises to help increase the number of uveitis specialists. You can find our more about Olivia’s Vision on their website.

Our registration number is: Birdshot Uveitis Society – Registered No: 1145349.

We will be making changes to our website and information leaflet to reflect this change.

Kind regards

 

ANNIE AND REA

Birdshot Uveitis Society

Artists at Birdshot Day 2010 and 2012

Jenny Wright attended the first Birdshot Day in 2010 where she ran a small art workshop where anyone could draw what they thought it was like looking through Birdshot Eyes. Jenny has since  published the attached paper which describes what she found out.

We thought that members of BUS  might like to have the opportunity to read  this and think about how you might depict what is going on in your eyes, as a way of keeping a record, or explaining your vision problems to your ophthalmologist.

This is how Jenny describes it:

The paper explains the remit and outcomes of the drawing workshop at the Birdshot Patients Day in London, and includes some of the images that were produced.  As well as expressing what was going on in a patients eye,  it was also useful for medical students and other professionals to have a closer dialogue with those directly affected by Birdshot and helped them to understand the disease process and symptoms.”

The paper has been presented to a number of audiences and the drawings have been exhibited.  Jenny has quietly been helping us to get Birdshot Uveitis better known through this more unusual approach.

Jenny is running a similar workshop at the next Birdshot Day on Saturday 3rd March 2012 and she would love to see images of how you see.  So don’t be surprised if she asks you to sit down and make a drawing.  You don’t need to worry – you don’t have to have any drawing expertise or experience, and it might provide a little light relief to the days other activities.

Painter Susan Piper is also going to be exhibiting some of her paintings which have been inspired by medical images of  her own birdshot eyes.  We hope to have more about this in a later news item.

 

 

 

 

Important Note re Grange St Paul’s Hotel Concession

A number of people have been asking about the accommodation offer at the Grange St Paul’s Hotel for the Birdshot Day and there are two things that we need to clarify:

The rate quoted of £109 plus VAT is per room, whether for single or double occupancy.

If you are interested in staying there on either Friday 2nd, Saturday 3rd or Sunday 4th nights, please do not delay in making your booking.  We have only so many rooms allocated to us, and  you must book a room before Sunday 5th February to be guaranteed this rate.  Please  contact reservations and quote “Birdshot Day” when you make the booking.  The contact details for the hotel are:

10 Godliman Street
London EC4V 5AJ
Tel: +44 (0) 20 7074 1000
Fax: +44 (0) 20 7074 1100

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