If you have yet to register but want to come, you must let us know very very quickly as we are about to finalize our numbers.

Below are all  relevant documents as PDF files for you to print if you are able to.

• Programme for the day
• Mini- Biographies
• Exhibitors
• How to get there
• Consent form for filming /photography, just in case you get caught on camera.  We’re planning to make a DVD from the days proceedings to circulate
• Sponsors for the day . We are very grateful for your generous support  without it we would never have got the day off the ground

We think we  have a great programme planned for you.  Fingers crossed it goes to plan.

If anyone has difficulty with printing out these documents out, please let us know and we will print copies for you.  We are sure you can understand our keeness not to waste money, or paper for that matter.

It will be great to meet you all.

Best wishes

THE BIRDSHOT TEAM

My Blepheritis is, I believe, as a result of taking immunosuppressants and gives me itchy, red rimmed eyes. My dry eyes are caused, I believe, by the steroids (which has also given me dry skin and dry hair – what a nightmare!) and the symptoms include a constant feeling of having ‘something’ in my eye, like grit, and a greater sensitivity to glare, as well as itching and redness.

Sometimes it is difficult to tell which symptom is related to which problem.

I was spending a fortune on buying preservative free eye drops in containers which did not go off rapidly – of course, these weren’t available on prescription. Anything available on prescription just didn’t seem to work for me. However, what I did buy really helped to relieve the problems, and also helped reduce my sensitivity to glare.

As you all know, Annie and I attended a Uveitis conference recently, and we came across an organisation called SCOPE Ophthalmics which produces eye drops called Hylo-Tear and Hylo-Forte. These are preservative free and in a container that gives a continuous dose without going off quickly and the drops are easy to apply. I took lots of samples and have been using them ever since.  And they are great.

They are available on prescription – hooray! And my GP now knows to include them on my vast prescription list, and my local chemist has started stocking them for me.

Scope Ophthalmics gave us some samples, and I can bring them with me on the Birdshot Day, so you can try them. We have also asked Scope if they can attend, so if they do, you can speak to the experts!

Ok, so dry eyes and blepheritis now sorted.  Next to sort is a cure for Birdshot!  Hopefully, the Birdshot Research Network which should be launched on 11 September will begin to tackle this.

Rea

We came across a paper on a “Nurse-led formal health review for immunosuppressed patients with uveitis” by NP Jones and M Pickford from Manchester Eye Hospital which we would whole heartedly agree with. We know from the feed-back we receive from patients with uveitis just how helpful and supportive these specialist nurses can be.

Abstract

Purpose To describe and analyse a method of detailed formal health review for patients with sight-threatening uveitis using oral immunosuppression.

Methods Prospective clinical study of 37 patients.

Results Treatment side effects were absent or tolerable in 31 patients (84%) but 34 significant treatment side effects or other significant clinical findings were newly identified. Ten patients underwent a treatment change including three who transferred to a different immunosuppressive.

Conclusions

Formal health review has proved useful in identifying treatment side effects previously not volunteered by patients. A modified form is to be embedded within our clinic management system. We recommend such reviews to enhance drug safety in patients with sight-threatening chronic uveitis using oral immunosuppressives.

Eye (2009) 23, 1400–1403; doi:10.1038/eye.2008.270;

published online 26 September 2008.

The whole article can be found here as a PDF.

There are still a few places left for the day.  It is not too late to book a place.  Email us now if you want to come:- birdshot@live.co.uk!

Our grateful thanks go to:-

It would be really interesting and helpful for us to know about individual personal experiences of IviG treatment.  It has been successfully trialled in France for Birdshot but we’d like to obtain more first hand information as, in our view there is nothing to beat that.

Thanks!  We look forward to hearing from anyone who might be able to help this member.

Annie and Rea

It is a great honour to be able to welcome Professor Phuc LeHoang and his colleague Dr Christine Fardeau to talk about  the latest birdshot research programme that they are carrying out in France.    We will also get the chance to hear about future developments and  will  be introducing the Pan European Birdshot Research Network to you all.    We are  most fortunate to have the 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.

Book your places now.  The conference, including lunch, is free,  as we have managed to obtain sponsorship but we do require a £20 refundable registration deposit. This can paid on line here (debit and credit card & PayPal).   Please note that the payment will show that it is being made to the Uveitis Information Group.  
You can also pay by cheque and information about how to do this is here.

 If you are unemployed we will waive the deposit as we do not want people to be prevented from coming due to financial constraint.

Health professionals frequently advise daily warm compresses for lots of common eye problems – Dry Eye, Blepharitis, Styes and Cysts. Hot wet flannels are ineffective and compliance is poor. The EyeBag is designed to treat these conditions. The EyeBag is a simple re-usable black and silver silk hot-compress. It is designed to be heated in a microwave for 20-30 seconds just before use and can be re-heated around 200 times. It is usually used twice a day for the first fortnight and several times a week thereafter. Stunning symptomatic improvement means happier patients with less frequent hospital visits.

You can find an EyeBag stockist near you or order online at http://www.eyebagcompany.com/

This is such a simple and effective bit of kit for many people with eye problems that come with uveitis.  Blepharitis and dry eye, for example, are possible complications for people with birdshot due to a compromised immune systems.

We’re delighted to tell you about this particular product because it is effective and easy to use.  The Eye Bag company has generously sponsored  Uveitis Information Group’s work, which includes Birdshot Uveitis Society.

Thank you so much.

Annie and Rea

Anyone interested is asked to phone  084 55 55 55 28 and leave their name, address and telephone number or to email audio@infosound.org.uk.

We are often asked about  clinical trials that are going on in the UK and also in the rest of the world. Sadly there are no clinical trials that relate specifically to birdshot, and hardly any current ones in the UK for uveitis.

Uveitis Information Group website has a whole section on clinical trials that you might like to read before even considering one. There is also a booklet published by the UK Clinical Research Collaboration which may be of interest to you.

Understanding Clinical Trials

This article is included by the kind permission of Professor C Stephen Foster of the Ocular  Immunology and Uveitis Foundation and Massachussettes Eye Research and Surgery Institution, Boston.   It’s mainly about appropriate treatments  for  auto-immune forms of Uveitis in the USA,  but a lot of what it says is relevant for people with Birdshot Chorioretinopathy in Britain.

“Uveitis of the eye is inflammation inside the eye, specifically affecting one or more of the three parts of the eye that make up the uvea: the iris (the colored part of the eye), the ciliary body (behind the iris, responsible for manufacturing the fluid inside the eye) and the choroid (the vascular lining tissue underneath the retina).

Problems associated with uveitis are relatively under-appreciated by the general population and ophthalmologists alike. Few people realize, for example, that the third leading cause of blindness in this country is uveitis.

Approximately sixty different things can cause uveitis, and the “detective work” involved in trying to discover what a particular patient’s cause for their uveitis is may be extremely tedious and costly. This “detective work” is much more like diagnostic work involved in internal medicine than like the typical work involved in the practice of ophthalmology. Primarily for this reason, few ophthalmologists choose to specialize in uveitis. Additionally, the care of some forms of uveitis requires the use of systemic medications (nonsteroidal anti-inflammatory drugs, steroids, and/or immunomodulators, “chemotherapy.”) This too, dissuades many ophthalmologists from the practical care of patients with uveitis.

There are, however, several centers around the United States specializing in the care with patients with this potentially blinding problem. Additionally, increasing numbers of younger ophthalmologists are spending time, after completing their training in ophthalmology, getting specialty training so that they may care for patients with uveitis.

Both infectious and non-infectious, as well as malignant causes for uveitis are represented in the spectrum of patients cared for at the specialized centers. Clearly, then, “getting to the bottom of it,” and definitively identifying the cause of the uveitis is quite critical, since proper choice of treatment is so dependent on the underlying cause; the proper treatment for one cause would in many instances frankly be deleterious in the care of patients with uveitis from another cause.

Uveitis on the basis of autoimmunity  is the most common form of uveitis. This uveitis tends to be recurrent.

For uveitis treatment, we employ a “stepladder” approach to the care of our patients with autoimmune uveitis, generally beginning with steroid drops,advancing to steroid injections and/or pills, adding an oral non-steroidal anti-inflammatory medication, and culminating in the use of an immunomodulatory, chemotherapeutic drug if the patient’s uveitis continues or continues to recur each time the steroid medications are tapered and stopped. The reason for our philosophy on this point of a limit of total amount of steroid used stems from the fact that so many potentially avoidable complications occur with open-ended use of steroids. Additionally, we have a philosophy of a complete intolerance to continued recurrences or the continuance of “low grade” inflammation in the eye. This philosophy is born of thirty-one years of experience here in seeing the consequences of allowing such recurrences or of allowing such “low grade” inflammation to persist: slow but inevitable damage to the eye such that vision is progressively lost.

We believe that, as more physicians recognize the lack of progress in reducing blindness secondary to uveitis over the past forty years, they will increasingly abandon the old attitudes of treating this disorder and will embrace a new philosophy of a zero tolerance model for inflammation and will employ a step ladder algorithm in their treatment approach to patients with uveitis.”

If you have a diagnosis of birdshot it is important to be treated by a uveitis specialist who understands about aggressive treatment.  Annie