2nd Birdshot Day, 2012 on You Tube

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.

 

Help Us Make Birdshot a Priority For Research!

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?

 

Birdshot Day on You Tube

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.

 

Government Rare Disease Plan – Consultation

Birdshot is a rare disease.  Because of this, it can sometimes be difficult to get the right diagnosis and treatment.

The Government will be implementing a Rare Disease Plan by 2013.  This plan SHOULD help all of us, with rare diseases get better services.  But will it?  The plan is now being consulted on, and the closing date for comments is 25th May.

This is our opportunity to give our opinions, and make sure the rare disease plan meets our needs.

You will remember that BUS has worked with Rare Disease UK  (the national alliance for people with rare diseases and all who support them) to help advise the government on what people with rare diseases need.  Some of our recommendations have been incorporated, but we are worried that this plan will not fully meet the needs of those of us with Birdshot and other rare diseases.

Individual patients can respond to the consultation, as can patient organisations and healthcare professionals.  If you are an individual patient, or a healthcare professional, please take the time to have a look at the rare disease plan, and see if you think it will work for you.  The plan can be found at:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_132880

If you want to understand why the proposed rare disease plan might not meet needs, Rare Disease UK have produced a very good presentation that you can listen to at:

http://www.anymeeting.com/RDWebinarEngland/EA56D880804C

If you have any concerns at all, following listening to the above presentation, please do submit your comments to the Department of Health.  If you need help in designing your comments, Rare Disease UK has provided help – just click on the link below.

advice document

Alternatively, you can submit your comments to Rea at info@birdshot.org.uk and she will collate and present them

Many thanks everybody – if we work together, we might be able to get an NHS system that meets our needs!

How are patients involved in licensing new medications?

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.

Food Poisoning and autoimmune diseases

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.

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

London/SE Meeting 21st January – more details!

Happy New Year! We hope you had a good festive season.

We are looking forward to seeing everyone on 21st January from 1.30pm at St John’s Hall, New North Road, London N1 6JB. We will be providing tea, coffee and biscuits.

Sandra has very kindly worked out directions to the hall:

 From Old Street Station  10 min walk

  • Exit one, go up stairs to the right and stay on that side and keep going straight.
  • First sign you will see is Brunswick Place  carry on past and you will pass the Premier Inn
  • Next sign Chart Street,  on left side of road you will see City College,
  • Next sign Haberdasher Estate also there is a Barclays Bike station and a Tesco Express.
  • Then you will see a set of traffic lights and a green coloured shop on corner
  • Look to your left and there is a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St John’s Hall

From Moorfields Main Entrance  7 min walk

  • Go Right towards Old Street Station
  • At first set of traffic lights cross and go down Provest Street, there is a bus stop from which St John’s Hall is one stop
  • or carry on walking and follow the road round into Vestry Road, near the top of road on left  you will see Nile Street Dentist
  • At top of the road turn left into East Road, you will see Tesco Express and a set of traffic lights with a green coloured shop on corner.
  • Cross at lights and straight in front you is a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

From  Moorfields Main Entrance  7 min walk

  • Go left towards Angel, cross the road at the traffic lights, there is a cafe on the corner.
  • Turn into Sheppness Walk, from here you can either:
  • Get 394 bus from the stop opposite the police station to Minton Street which  is about 5 bus stops.
  • Get off the bus at Minton Street and go right past the Beehive Pub.
  • In front of you is a green coloured shop, turn left just before the shop and you will see a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

OR

  • Walk up to traffic lights, turn left into Murrey Grove, half way down there are some shops.
  • At traffic lights at end of road look straight across and you will see GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

If you are definitely planning on coming on the 21st please could you reply “yes” to southeast@birdshot.org.uk so that we have an idea of numbers and please could you also let us know if you are travelling from Kent.

If you need any further information please do not hesitate to contact us, we hope to see everyone on the 21st.

Kind regards

 

Sue, Sandra & Lesley.

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