Author Archives: Annie

Birdshot publicity

Posted on by
Reply

Two posters are being displayed at the Royal College of Ophthalmologists Congress next week, where we hope they will draw attention to Birdshot.  Nik Koutramanos’s poster was displayed at the ARVO (American Association for Research in Vision Opthalmology) conference in April 2011 and is now also being displayed at the RCO congress.  It tells the story of the detailed  Evaluation of the Birdshot Day 2010.  Nik is a trainee Ophthalmologist who was actively involved in the day and was  responsible for writing and designing the poster in collaboration with Birdshot team members:- Rea Mattocks, Annie Folkard, Claudia Wilson- Barrett (specialist nurse) , Catey Bunce (statistician), Carlos Pavesio (consultant ophthalmologist) , Narciss Okhravi (consultant ophthalmologist).

Here is Nik’s comment about presenting the poster at ARVO.

“Our poster was very popular in ARVO.  More people than I expected stopped and read it.   It was helpful that we were surrounded by dry scientific posters.  Some had nice things to say, some took a photo of it.  People were impressed that we were able to collect so much information from just one day! We had another 3 birdshot posters around us, all of which were scientific/research based. To my amazement, at some point during the day that I was presenting, a small brown bird, which had somehow strangely managed to find its way into this big windowless airconditioned building, flew over many of the posters, in big circles, and went and sat on one of the birdshot posters stands for a few minutes. I thought that was fairly strange and if I was to be a believer in omens, this could only be a good one :)”

A bird’s eye view from the patients perspective shows  Patients at the heart of Medical Education.   The poster was designed by 4th year UCL medical student  Louise Ramskold,  in conjunction with Emily Kirkby, Ruthiran Kugathasan, Nik Koutroumanos, Narciss Okhravi.

All this publicity raises the profile of Birdshot and BUS within the ophthalmological and eye worlds.

We’d like to thank all those involved for their hard work and helping to raise awareness and get publicity for Birdshot amongst professional.

 

 

 

 

Article about Birdshot in Optometry Today

Posted on by
Reply

Below is a link to an article which appeared in the April 2011 edition of Optometry Today. ” Birdshot Case Study“.    It was written for us by Emily Kirkby, a student who was involved in the Birdshot Day in September 2010, with help from Rea, her consultant Nigel Hall, Narciss Okhravi and other members of the Birdshot team.

As  most of us with a Birdshot diagnosis know, Birdshot Chorioretinopathy is difficult to diagnose, particularly in the early stages before the tell tale lesions appear.  A  case study like this that appears in a widely read optometry magazine should help to make optometrists more aware about this rare autoimmune eye condition.  Opticians are the people we often first turn to when we have eye problems.  With Birdshot, it is really important to get speedy treatment and if the optometrist or optician is informed about it, we stand a chance of this happening.

Please let your optometrist know about this article – help spread the word.

Interleukin-17 and pro-inflammatory cytokines in the aqueous humour of birdshot patients

Posted on by
1

Dutch researchers from the University Medical Centre of Utrecht have reported a connection between raised intraocular levels of interleukin (IL)-17 and other immune mediators in birdshot chorioretinopathy (Kuiper, JJ et al. 2011).

Aqueous humour (AqH) and serum samples were taken from 16 patients with birdshot chorioretinopathy and these were compared to aqueous humour samples taken from 11 age-related cataract control patients. A multiplex immunoassay was performed on the samples to determine the levels of 23 different immune mediators (T-cell, pro-inflammatory and vascular-active mediators).

The results showed that the T-cell mediators interleukin IL-2 and IL-17, and the proinflammatory mediators IL-1β, IL-6 and tumour necrosis factor α, were significantly elevated in the aqueous humour samples from the birdshot patients compared with those from the control group. Also, the elevated aqueous humour levels of IL-1β, IL-17 and tumour necrosis factor α in the birdshot patients were higher than the levels in their serum samples. From these results, the researchers suggest the ‘novel concept’ that birdshot is an autoimmune inflammatory disease restricted to the eye and associated particularly with elevated IL-17 levels.

The link below goes to the article, which was published in 2011:

URL – http://www.ncbi.nlm.nih.gov/pubmed/21570674?dopt=Citation

 

 

Neil’s story

Posted on by
5

An Australian Birdshot colleague of ours called Neil, recently wrote to us to tell us about his experimental approach to supplements. He has been trying to find a way of improving his vision through supplements and told us why he had decided to do this.

Over the years he has been on a number of the usual toxic treatments. Following a recent flare he was put on prednisolone and methotrexate. He reports that after some months on the methotrexate, a wavy line suggested his eyes were continuing to deteriorate and 15 mg/day of prednisolone was added for a couple of months after an ERG result showed rods were bad; cones were indicating nobody home!

Here is Neil’s story in his own words (much of what he says will ring bells with many of us).

“I noticed an article http://abstracts.iovs.org/cgi/content/abstract/43/12/2542 on increased retinal activity following a trial of a group of people taking lutein, nicotinamide (vitamin B group) and vitamin E, so thought I might as well try it for myself to see if it made any difference to my ERG tests, on the assumption that it would not have a negative effect.

To mimic the study, I took a bilberry and lutein tablet, a multi-B and vitamin E tablet. In addition I took folic acid in the Multi-B which I understand helps with tolerating Methotrexate.

The ERG in January and check up in March showed that the left eye reading level had returned to the level two years previously (couple of extra lines) and I am seeing a little more when I enter a darkened room.

Retinal inflammation has gone with prednisone and I can read with my left eye again.

So all I can say is the lutein, nicotinamide and vitamin E didn’t harm my outcome.

Here are the details of what I took.

The Health food shop found me NutriVital Mega B High Potency tabs one per day
viz: http://www.nutrivital.com.au/product_detail.php?seq=23

I added Natures Way Vitamin E 500 iu – one per day although I didn’t take quite as reliably)
and 
Bilberry 10,000 plus with lutein by Micro genics vision deficiency formula – one per day
http://www.micro-genics.com.au/product/bilberry-10000-plus-vision.html

I also used Nutralife Bilberry 10,000 plus + lutein complex as the tablets were easier to take from a bottle rather than in foil.

Subsequently my GP recommended I increase the folic acid to 5mg/day to counter methotrexate effects, but the improvement was evident before then.

I was on 10 mg methotrexate once per week for a few months after complaining of loss of central clarity in left eye and an ERG test that showed basically non-detectable response to rods and cones with some small response to flashing light, but not for night vision. Some wavy lines at the edge of the computer screen worried me and a scan showed some retinal swelling in central left eye, so (reluctantly) I added 15 mg/day prednisone.

I tapered this back myself to 10 mg/day until just before the next ERG was due… then…
Coming back from a fishing trip I noticed light poles bent half way up – 1m to the right through my left eye, so I boosted for a few days to 20mg/day prednisone to try to cheat on my ERG.

After verbally savaging my 20 year old son and snapping at my wife, I admitted defeat and reduced the dosage of steroids.
ERG showed 50’s and 60’s for rods and cones this time and I felt night vision had returned to vaguely useful entering a dark room and possibly dusk driving. (evidently normal range is 250 to 600 so I hardly starred it, but it’s better measurably)
Stayed on 12.5 mg/day prednisone for a couple of months and bent poles went away – slight horizontal bump in reading 12 point letters but left eye continues to improve and down to 10 mg/day prednisone.

Eye section scan showed rods and cones in left eye looking reasonably normal thickness in parts of scan which is interesting as I feel my peripheral vision has improved in that eye. Eye chart was about 2 lines better with pinhole as glare still a problem so I’m back to 2009 levels on the irrelevant eye test.

My choice of sunglasses has changed from dark grey or yellow to light grey polarised and I can almost say glare tolerance is improving as a consequence of this choice for driving.

Can’t say if prednisone or supplement has contributed to improvement but I continue to take both as the trial lasted 12 months and I am 7 or 8 months on from trying it.

Red wine, chocolate and thai curries are also a feature as is dark matured Australian Bundaberg Rum with Coca-Cola, so feel free to adopt any that appeal – with lots of fresh fruit.”

LoL Neil

 

 

How can we get hold of new medicines?

Posted on by
Reply

Many of us with Birdshot will have experienced the difficulties of getting hold of medication that controls our Birdshot, if we don’t respond to the ‘usual’ medication regime of steroids and mycophenolate mofetil.  For many of us, we have had to get our consultants and GPs to apply to the relevant health agency (usually the Primary Care Trust that covers our area) for a ‘special circumstances hearing’.  Often, this takes months, only to be told, at the end of the process, that the PCT will not approve the medication regime we have applied for.

Well, help is at hand!  Not only is a ‘rare disease strategy’ being implemented across the UK in 2013, but also, the Genetic Alliance UK is currently looking at how we, with rare diseases, should get access to medications (none of which have been specifically licensed for our disease) and who should decide whether they are safe or not.

You can help.

The Genetic Alliance UK is now launching a recruitment campaign for an innovative and exciting research project about new medicines.

They want your views and your participation – It’s all about getting your views heard.  Below, we include a few more details about the project and how you can get involved.

Anyone interested in participating should visit the Genetic Alliance website for full information but here is a short summary:

New medicines: How should we weigh the risks and benefits? And who should do so?

Genetic Alliance are looking for people who are affected by a severe, rare or genetic condition, to take part in a Citizens’ Jury later this year. They are looking for up to 16 individuals to form a diverse jury that will deliberate a very important issue – the risks and benefits of new medicines. Not only will jurors get their voice heard in an innovative and high profile way, but they will be paid for their time too!

There is further information available about the project and how people can get involved on the Genetic Alliance UK website, including a short explanatory video clip and an online questionnaire for people to register their interest.

The aim is to generate as much awareness and interest in the project as possible! To  find out more please contact Project Officer, Amy Simpson (asimpson@glam.ac.uk) or Marketing Officer, Julian Walker (Julian@geneticalliance.org.uk).

 

Rea and Annie

 

 

 

Susan Krieger faces daily what we all fear

Posted on by
Reply

Susan Krierger suffers from “birdshot retinochoroidopathy,” which the lecturer in feminist studies describes as a “rare autoimmune disease that causes inflammation on my retina and choroid and affects both my central and my peripheral vision.” The upshot: She’s blind, or rather, on a long journey toward blindness.

Krieger’s latest book, Traveling Blind, is her discovery, with companions, of a new world and a new kind of vision as she journeys through cities, airports and the deserts of the Southwest.

Information about Susan’s books can be found here.

Short Birdshot Day Movie

Posted on by
3



Here is the five minute movie which has been made for us by Alan Lacey  (w3media ltd), from some of footage taken on the Birdshot day back in September last year.   We were very luck to get Professor Peng Tee Khaw from Moorfields to be the Narrator for us and we are hoping that it is going to be posted on the NIHR website.     We thought some of you who weren’t able to make it might like to view it to get a taste of what went on.

We are already planning the next occasion and hope to have it early in March next year.    As soon as we have a date and a venue finalise we will be advertising it here.

Next year, we hope that more of you will be able to come and we want to make it even better than the last Birdshot Day.

We understand that the DVD which includes all the talks and interviews  from the day is also nearly completed.   Watch this space!

 

 

Website rebuild

Posted on by
Reply

As some of you are aware we have been having problems with the website, and before it actually broke, we decided we needed to rebuild it urgently. We knew that this was something that we would have to do ourselves, as  we simply didn’t have the necessary funding to pay for it. There wasn’t time to find sponsorship for this either.

Neither Rea nor I are really experts in this field, but luckily we found Tracey Rickard, (WordPress custom theme, design and website development),  via another contact,  and she kindly came to our rescue.  Unbelievably she has given a large chunk of her time to us for free, for which we are extremely grateful. She  successfully performed the upgrade for us, and we are particularly glad that we involved her as it  turned out to be a lot trickier than envisaged.  She subsequently helped with some of the styling as well.  We would certainly have struggled without her.

Apart from the visual appearance, you will notice some changes:  all information is now available to everyone. We have abandoned the members area, now that we have the Discussion Forum up and running.  (Separate registration required)

Please be reassured that you are all still safely registered on our database.    The registration process for new members to the  database is now slightly different. It will now be by email done by us, rather than by automated website software.

We will be sorting out any glitches and problems that develop as quickly as we can. Please tell us if you encounter problems as we can’t sort them out if we don’t know about them!

Normal BUS news updates should resume at the end of this week.  Watch-out for the email and make sure you have both our email addresses birdshot@live.co.uk and birdshot@uveitis.net, saved in your address book to be sure to receive the update.

ANNIE AND REA

 

Please  tell us what you think by commenting below.

Dexamethasone for Ocular Inflammation

Posted on by
Reply

A new trial, conducted by the Department of Ophthalmology at the University of Illinois has just reported on the efficacy of Dexamethasone (known as Ozurdex) and concludes that ‘The newly approved dexamethasone implant, Ozurdex, is a useful addition to our local armamentarium in the treatment of noninfectious intermediate and posterior uveitis given its efficacy, safety, and ease of use in the outpatient’.

It also concludes that, on the available information, ‘The single injection, 26-week data indicate that the implant is well tolerated and produces meaningful improvements in intraocular inflammation and visual acuity that persist through 6 months. The available 6-month data also indicate that this implant confers much less of a risk of ocular hypertension than other forms of intraocular steroid therapy. However, future longer-term trials are needed to evaluate the efficacy and safety data in patients who receive multiple injections.

We know that some of you are already on Dexamethasone (Ozurdex), and this sounds like good news for others who are not responding to oral immunosuppressants and steroids. Dexamethasone has received FDA approval in the US (FDA is the equivalent of our NICE – the National Clinical Institute of Excellence) so we should be able to get hold of it in exceptional circumstances.

Is anybody on Dexamethasone? Or Retisert (the article seems to conclude that Dexamethasone may be more effective, with less side effects than Retisert)? Anybody want to comment on this?

The full article can be found at: http://informahealthcare.com/doi/abs/10.1517/14656566.2011.571209

Rea

Atypical Birdshot?

Posted on by
Reply

Anyone out there with symptoms that don’t seem typical for Birdshot?

How many people are affected in just one eye? Many consultants believe that Birdshot is bilateral (i.e. it affects BOTH eyes) and would not diagnose Birdshot if it affects just one eye – do we think this is true? If it is not Birdshot, then what is it?

How many people have pain in their eyes? Birdshot is thought to be painless. I know that I have very painful eyes, particular if I move them (shooting pain deep in the eye), and I know of at least two others who say the same. Anyone else?

How many people have been diagnosed with Birdshot but do not test positive for HLA A29? Again, some consultants would refuse to diagnose Birdshot if there is no HLA A29 positive test. What do we think?

How many people have strange visual symptoms which baffle their consultants? For example, I seem to have images left on my retina for a long time. I will put my keys down, and then I see my keys on a range of other surfaces as I look around, making it very difficult for me to find my keys again! I also have illusions – I will be walking down the street, and I will see a very large cow walking towards me – impossible, I know. What I think is happening is that there is a large shadow, and my brain tries to make sense of this by accessing its filing cabinet to find something of that shape and size, and interprets it as a cow!

How many people have found that their brain seems to have slowed down when trying to see? For example, I will look at my emails, and although I can ’see’ them, I cannot actually read them – the mass of information in a long list just does not compute in my brain – its seems like gobbledegook – although if I look at individual words, I can make them out – I just can’t make sense of the totality of it.

Any other strange symptoms people have? Or things that seem atypical of Birdshot?

We are trying to understand the complexities of Birdshot, so it would be really good to hear all your stories. That way, we may be able to understand whether people have been possibly misdiagnosed, or whether Birdshot presents quite differently in different individuals, or whether there are a range of other problems that masquerade as Birdshot.

As always, we want to thank you for your interest in Birdshot and this website – we have had a huge influx of new members recently and each new member brings more knowledge and understanding of Birdshot. Thank you all, and we would be grateful for your feed-back on atypical (or typical) signs of Birdshot.

Rea