A UK charity providing support and information for people with the rare, hard-to-treat, autoimmune, eye condition called birdshot chorioretinopathy or birdshot retinochoroidopathy, also known as birdshot uveitis
A study, undertaken by scientists in Russia and published in June 2011 has looked at targeting B Cells as a potential way of controlling autoimmune diseases.
Some of us are already on a medication called Rituximab which targets B cells. Rituximab is a monoclonal antibody which works on a protein found on the B Cells and which may be implicated in our auto-immune disease, Birdshot. We know that Rituximab seems to work for some people but not for everybody, and we also know there are some side effects of Rituximab.
The Russian study looked at a way of more effectively targeting the B Cells with less toxic side effects, and the study seems to suggest that they have found a possible way forward. Wonderful – yet another possibility for us.
We have posted about the Ozurdex implant before and recently learned that the National Institute for Health and Clinical Excellence (NICE – the body in the UK that provides guidance on what medications can and cannot be used here) has recommended Ozurdex drug-infused eye implant (made by the pharmaceutical Allergan) for the treatment of macular oedema.
Macular oedema is inflammation and a build-up of fluid in the macula caused by blockage in a retinal vein (this blockage in the retinal vein is known as RVO – retinal vein occlusion). Macular oedema is the leading cause of vision loss in people with RVO.
The Ozurdex implant contains a steroid called dexamethasone, which is slowly released into the eye to control the oedema (the fluid build-up), reduce inflammation around the RVO and therefore improve vision.
It is implanted with a specially-designed applicator and can last up to 6 months.
Ozurdex has proved very promising for macular oedema and Allergan are now conducting trials to see if it can also effectively treat wet age-related macular degeneration.
As macular oedema is one of the possible complications of Birdshot, it would seem that these implants could soon become a better way of treating this sight threatening problem. We know of at least two of our members who are currently being offered these implants as a way of treating their macula oedema.
Mr Ian Pearce, Consultant Ophthalmologist and the Clinical Expert representative of the Royal College of Ophthalmologists, said: “The availability of a licensed, effective and now NICE recommended treatment is a significant step forward for management of RVO patients in England and Wales and we look forward to ophthalmologists providing the treatment as soon as possible.”
For more information, visit Allergan’s Ozurdex website: www.ozurdex.com where there is a link to frequently asked questions about the Ozurdex implant.
Many of us take a range of herbs and supplements in order to try and keep ourselves well throughout our often toxic treatment for Birdshot. We should always check these herbs and supplements with our consultants, there can be adverse interactions between these and medications we are taking. We should all remember that just because we can buy them over the counter, this does not mean they are always totally safe, especially when we are taking a range of medications.
We have attached here a PDF which identifies potential herb and drug/medication interactions. It lists most of the commonly used herbs.
We thought that the most striking ones were:
Licorice which increases the level of drug in our body by decreasing drug metabolism (i.e. the rate at which our bodies absorb the drug). **** (Please see comment number 2 below)
Polyphenol – contained in Chamomile and Green tea, lime flowers and Rosemary which is said to reduce the absorption of iron.
Bilberry and Tumeric might affect your aniplatelet activity (antiplatelets help ensure we don’t get thrombosis)
Valerian may increase the effect of CNS depressants (sedatives or tranquillisers) or alcohol
Hopefully, this article will alert us all to the potential consequences of taking large doses of some herbs, if we are on medication.
The Birdshot Day DVD has finally arrived. It contains recordings of all of the days talks, interviews with people with Birdshot, health professionals, charities and low vision specialists who attended.
Today we have written to everyone who came to the day telling them about it and asking if they want to receive copies. We have written to our consultant specialists to see if they want copies, but we also want to hear from you if you would like to receive a copy as well. (subject to availability!)
We have a limited stock, and what we are suggesting is, rather than charge for the DVD, you can make a small donation to help pay for the postage and packaging costs, with anything left over going towards a future Birdshot Day. To do so, please press the donate button on the website.
If you would like a copy, please email us and let us know where you would like the DVD delivered to. Annie and Rea
Credit: David Bethell graphic artist – DVD cover design
We are looking for individuals who have had either type of implant, Retisert or Ozurdex, who would be interested in sharing their experiences about this type of treatment with people who are considering treating their birdshot in this way.
We believe that there have been more of this kind of operation in the USA than in the UK and would really appreciate it if anyone who reads this post, who has had this done could get in touch with us at via our contact form, so we can link you up with a couple of our members who are anxious to chat to people who have had this done, so that they can get some first hand feed-back.
Alternately, if you don’t want to email individuals directly we would love to have a write up on your experiences which we could publish on the website for all our members to read, or you could log-on to our forum and post details of your experience there.
Thanks. It is great to have a Birdshot community like this so that we can share experiences. We look forward to hearing from you soon.
“The human body’s immune system can quickly track down and kill cells that don’t belong. Take certain kinds of bacteria: molecules on their surfaces flag them as foreign invaders, alerting the body’s defenders to the breach and drawing a full-fledged attack on anything waving that molecular flag. But sometimes the system mistakenly attacks the body’s own cells. The result is autoimmune disease, such as type 1 diabetes, in which the insulin-producing beta cells of the pancreas are attacked and destroyed by T cells. ” Read about this in an article by Katie Moisse entitled: Counterintuitive Cure: A Nanovaccine That Stops Autoimmune Disease by Boosting the Immune System which describes a new treatment which prevents type 1 diabetes in mice by turning the immune system on itself.
It seems to us that direct parallels can be drawn for our disease Birdshot Chorioretinopathy and this idea could be useful in finding us a cure.
This study looks at eyes receiving fluocinolone acetonide implants (Retisert) over a 7 year period and concludes that there is a high risk of developing cataracts and increasing intraocular pressure (glaucoma). The study authors include people who were involved in the Bausch and Lomb trials.
This type of implant is not currently licensed for use in the UK, so you would have to be an extremely special circumstance to qualify for this type of treatment at the moment.
However for those with Birdshot, with bad inflammation, who can not tolerate sytemic steroids they do provide a potential, if not ideal option for treating inflammation in the eye.
Some novel research has been undertaken into Green Tea. It was published in Immunology letters 2011 May 20, and is entitled:- “Induction of regulatory T cells by green tea polyphenol EGCG.”
The study provides evidence as to why green tea might help to modify immune system behaviour and hopefully provides the foundation for future studies to further examine and evaluate dietary strategies to see if they might be used to help to control the immune system.
We are not sure how many of gallons of green tea you would need to consume to produce the required effect!
If you want to read more technical detail about this research, follow the link below.
We know some of our members have told us that they like to drink green tea in the hope that it might do them some good. If you are interested in some green tea recommendations – here are some varieties to try, courtesy of our Ozzie friend Neil who has obviously got into it in a big way on a work trip to China.
“I had a ten day aid mission to Chong Qing central China and fell ill on inward flight with shocking cold and cough.
All meetings with Chinese involved a thermos of green tea. I found it stopped my cough so I became the green tea monitor for the duration and the Chinese thought I was a definite convert!
For variety, try japanese green tea with baked rice flavour added.
Mid level good quality green tea is called Long Jin
Personally, I hadn’t thought of it for wider use than digestion.” Neil
We’ve just banked our second cheque from Easyfundraising and are pleased to announce that we have raised nearly £65.00 from the 7 people who have signed up for this simple way of doing normal on-line shopping. Thank you so much to those seven people for signing up!
It might not sound like much, but every penny counts and if all our members decided to shop this way, it would soon mount up! It’s an easy and free way for you to support Birdshot Uveitis Society. The brilliant thing about this way of giving is that it doesn’t cost you a penny.
We’ve teamed up with Easyfundraising who provide a shopping directory listing some of your favourite online stores. Hundreds of popular retailers are participating including Argos, Next, Debenhams, John Lewis, Toys R Us, M&S and over 2000 others. You can buy anything from books, DVDs and clothes, to larger items like washing machines and computers. It’s also great for buying Birthday and Christmas presents.
All you need to do is use the links provided on the easyfundraising site whenever you shop online. The retailer will then give Birdshot Uveitis Society up to15% of every purchase you make – it’s that simple!
It doesn’t cost a penny extra to shop and raise funds in this way, and you can even save money as many retailers give exclusive discounts, special offers and even ‘e-vouchers’ exclusive to easyfundraising.
If you already shop online why not help raise extra funds for us by using this completely free service? Follow the instructions below to find out how.
2. Once you are registered, use the links on the easyfundraising site to go to your favourite online shops and shop in the usual way.
3. Every time you shop online, log on to www.easyfundraising.org.uk and use their links to visit your favourite shops.
Please encourage your friends and family to sign up too and raise even more money for Birdshot Uveitis Society.
That’s all you need to do – apart from remembering to return to our site next time you are going to shop online!!
Providing you login and use the retailer links provided we’ll track all your transactions and pay your nominated cause the appropriate donations. These will then be displayed in your easyfundraising account (which you can access online).
If you have any questions or require further assistance please see the Easyfundraising FAQ section.
If you have a birdshot diagnosis, please can you kindly tell us which town/village or city do you live in and which hospital are you treated at. Please do this via a short email to Rea and Annie at birdshot@live.co.uk.
We have access to mapping software and thought it would be interesting to map the geographical location of people we know with Birdshot, together with the centres we know where Birdshot is treated.
We already have this information for around a hundred of our members, but it would be great if it could include a bigger group.
This map is something we wish to develop. It will help us pinpoint areas in the country where we could have a local support group. It will also be interesting to see if there are more people with a birdshot diagnosis in particular geographic locations. Who knows what we might discover!
Overseas members are also welcome to let us have this information as it will be very interesting to do this globally as well.
The Birdshot Day DVD has finally arrived. It contains recordings of all of the days talks, interviews with people with Birdshot, health professionals, charities and low vision specialists who attended.