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

Birdshot Chorioretinopathy diagnosed in Doc Martin ITV drama

A few of our members were watching Doc Martin on ITV when actor Martin Clunes diagnosed a case of Birdshot Chorioretinopathy. (24th October 2011)

Here is a description which we received by email from one of our members in case you want to see for yourself via ITV iplayer.

“The relevant bit occurs around 37 mins into the 46 min episode. Mrs Dingley, played by the splendid Anne Reid, falls off her bike. Doc Martin (Martin Clunes) appears, looks in her eyes to check consciousness, and then, with a simple ophthalmoscope that doctors and opticians use to check the retina,  says he can see spots on the retina, asks about shapes moving around in the eyes and then declares that as well as arcus senilis, she has birdshot chorioretinopathy. ‘At least with steroids and immunosuppressants, you won’t go blind’ he says.   The Anne Reid character is glad about that, as she has to look after her cat sanctuary.

Now, wouldn’t it be good if every optometrist and ophthalmologist in the land could make a birdshot diagnosis out-of-doors, with minimal instruments, and do it straight away with no other tests and with the patient taking it all so calmly?

I’m not sure how long the episode is on www.itv.com/itvplayer – perhaps seven days.

Perhaps Martin Clunes and Anne Reid could give some publicity to the Birdshot Day!”

Rea is already in touch with the programme makers to see if she can find how the Birdshot reference came about.  Certainly for people who suffer from Birdshot Chorioretinopathy all publicity is  good publicity and we are delighted that the eye condition has been highlighted on  the Doc Martin programme.

I checked out our member’s timings and it is pretty accurate if you don’t want to watch the whole episode but are intrigued to see the Birdshot mention.

Annie

Using Indocyanine Green Angiography for Birdshot

We came across a piece of French research (published in September 2011) that is very timely in reminding professionals that ICG – Indocyanine Green Angiography (green dye is injected into blood stream and quickly reaches the blood vessels at the back of the eye, which can then be photographed) is still a very useful tool for people with Birdshot as it can identify leakages that are hard to see by other methods such as Optical Coherence Technology (OCT).

This is yet another example of an ‘old’ method that, although superseded by a range of new methods, still has a part to play in our disease and should remain as one of the several monitoring and diagnostic tools used for Birdshot.

Here is an abstract from that research:

Desmettre T, Cohen SY, Devoisselle JM, Gaudric A

“A full interpretation of indocyanine green angiography images involves not only optical issues but also pharmacokinetic and biochemical aspects. These issues may involve biochemical changes in the fluorescence yield and the affinity of the molecule for lipoproteins and phospholipids. For age-related macular degeneration (AMD), the advent of photodynamic therapy and especially anti-VEGF drugs has increased the use of OCT in assessing treatment response and guiding retreatment. The ease and advantages of OCT have become increasingly associated with a decreasing interest in ICG angiography, which is becoming less well suited for the current management of AMD. An aging population, the efficacy of anti-VEGF drugs and the relative rarity of polypoidal choroidal vasculopathy (PCV) in Europe are factors contributing to our proportional increase in AMD patients. However, aside from AMD, the indications for ICG angiography remain little changed over the last decade: it remains important in diagnosing PCV and choroidal hemangiomas, since their prognosis and treatment are specific. Similarly, for certain inflammatory conditions such as Multiple Evanescent White Dot Syndrome (MEWDS) or Birdshot chorioretinitis, the value of ICG angiography remains significant. In addition, for the treatment of chronic Central Serous Chorioretinopathy, ICG angiography helps to find sites of leakage which otherwise might have been missed. The ICG angiographic appearance in this setting may also have prognostic value. Although the indications for ICG angiography are currently decreasing for AMD, these other conditions represent a large enough number of patients to justify the continued use of this original test, which remains complementary to other chorioretinal imaging techniques.”

The full article can be found at: http://www.ncbi.nlm.nih.gov/pubmed/21907446?dopt=Citation

Topical Interferon Gamma for Macula Oedema caused by Uveitis

We have a report on a clinical trial that seems to be still recruiting participants (although it is expecting to complete its primary investigations this month). It is being carried out by Robert Nussenblatt at the National Eye Institute in Bethesda in the US. This trial is researching Interferon Gamma–1b administered topically in a drop form rather than by infusion for people who have macular oedema as a result of uveitis (macular oedema can be a complication of Birdshot). This trial may be of interest to our US members, and more information can be found at

http://clinicaltrials.gov/ct2/show/NCT01376362

The trial will be looking for the change in excess central macular thickening as measured by OCT in response to interferon gamma-1b.

Below, we give a brief summary of the trial and who they are looking for:

Brief Summary

Background: – Uveitis is a serious eye condition in which the immune system attacks the eye and can cause vision loss. A common problem related to uveitis is macular edema. This is a swelling of the central part of the retina. This part of the retina is needed for sharp, clear vision. This swelling can lead to more vision loss. – Interferon gamma-1b is a lab-created protein that acts like the material made by the white blood cells that help fight infection. It changes the way the immune system reacts to the cells in the eye and may help to lessen the swelling in the back of the eye. It has been used as an injection to treat other immune diseases, but it has not been tested as an eye drop for use in uveitis other than a safety trial done at NIH in 2010.

Objectives: – To test the effectiveness of interferon gamma eye drops to treat macular edema caused by uveitis.

Eligibility: – Individuals at least 18 years of age who have autoimmune uveitis in one or both eyes, have had it for at least 3 months, and as a result have macular edema in at least one eye.

Design: – This study requires three visits to the study clinic over about 2 weeks. Each visit will last 1 to 2 hours.

Royal College of Ophthalmologists News writes….

URL:   RCO NEWS  A short piece about the “Birdshot Uveitis Society”, the “Birdshot Day,” the “Birdshot Day DVD” and the forthcoming “Birdshot Research Network Meeting” was included in the latest edition of the RCO News.  This newsletter is circulated to  a large number of ophthalmologists.  As it has a circulation list of over 1,000  it is a good place for publicity, as it will undoubtedly help us to get Birdshot Chorioretinopathy better known, across the wider ophthalmology community.

We are delighted to receive this publicity and very much hope that Ophthalmologists interested in Birdshot get in touch with us to find out more about the Birdshot Research Network Meeting which is taking place in Birmingham on the 18th October.

There are only a limited number of spaces so if you are interested in becoming involved and want to attend this meeting you need to contact us quickly before all the places are taken.

Annie and Rea

 

 

 

 

Pars Plana Vitrectomy for people with Birdshot?

Some of us with Birdshot experience real problems with floaters. Most affected individuals manage to get used to floaters and find a way of seeing ‘past’ them, but for a minority, the floaters cause significant visual problems on a daily basis.

When we face this situation, we may be told that getting rid of the floaters by undergoing a vitrectomy may cause more problems than it solves, especially if we are in flare-up or have active inflammation, so few people are offered a vitrectomy. Vitrectomy is the surgical removal of the vitreous gel from the middle of the eye, where the floaters are.

This research study, which was conducted in Spain, evaluated the anatomical and functional outcomes of using the pars plana vitrectomy (PPV) in the treatment of vitreoretinal complications (floaters) of Birdshot. The pars plana is part of the uvea choroidea, one of the three layers that comprise the eye.

This was a small study, looking at 9 patients with 16 affected eyes who had received a pars PPV and the study concluded that PPV seems to be a safe and effective treatment of vitreoretinal complications in patients with Birdshot.

Obviously, this is a very small study and it is difficult to draw too many conclusions from it, but for those of us who are very badly affected by floaters, it may be something you wish to talk to your consultant about so you can fully understand both the risks and the benefits.

You can get full details of the study at: PMID: 21823933  URL – http://www.ncbi.nlm.nih.gov/pubmed/21823933?dopt=Citation

Quinn Wilson Associates raise Money for BUS

 Kerry Quinn is an amazing, energetic and inspirational person who constantly thinks of others.  She set up Quinn Wilson Associates which specialises in using digital and social media to market organisations to help them become more successful.

On Friday 23rd September, she organised a small social media event at my local art gallery, Lemon Grove in Chiswick, London, and I was invited along.  I have to say I was in total awe of Kerry and her stunning social networking skills.  She is one of the nicest people I have met, and she spent a lot of time with me, giving me advice about how to use digital and social media to improve BUS.

Even better, she held a raffle and decided that all the proceeds would go to BUS – what a wonderful person!

The raffle prizes were a voucher for a hair cut and design at Tony & Guy (thanks to Tony & Guy, Chiswick for donating this) and a wonderful book of paintings by Fabian Perez, a very prominent artist (donated by Silvana Bedford at the Lemon Grove Gallery, Chiswick)

The raffle raised £124.  This adds to our growing pot of money for our next Birdshot Day on 3rd March 2012.

The whole event that Kerry organised was really helpful, as I met so many people who have offered their time for free to help me learn some new skills. and Kerry has said she will think about whether there are other ways in which she can help BUS.

If you want to find our more about Kerry, her website is at

http://www.quinnwilson.co.uk

And if you want to find out more about the Lemon Grove Gallery in Chiswick (Silvana has been so supportive of me, particularly when I was at my worst on medication and struggling to even get the shopping done – Chiswick is just full of wonderful people) her website is at

www.thelemongrovegallery.co.uk/

Team Birdshot just keeps growing and growing!

While I was at Kerry’s networking meeting, I met a solicitor, Eilish Adams from Adams Law and she told me about an interesting scheme called WillAid where, in the month of November, you can seek out a participating solicitor and make your will in exchange for a donation to charity.  You can find out more about this scheme at  http://www.willaid.org.uk/

Rea