Rare Diseases survey for familes and friends
We are publicising details of a survey that Rare Disease UK is conducting to help build a picture of rare disease in the UK from the perspective of patients, families and carers › Continue reading
I’m new to BUS
Hello all
I’m new to this forum and don’t have Birdshot, rather I have Still’s – aka juvenile rheumatoid arthritis + uveitis. But I am very relieved to find this forum, and will post more elsewhere in more detail if anyone is interested, as I am happy to share my experience with long-term use of oral prednisolone. › Continue reading
Filters and Tints to stop glare
Optima Low vision Services www.optimalowvision.co.uk
BUS has linked up with Optima, an organisation that produces low vision aids and equipment. We think they may provide some useful equipment for people with Birdshot. › Continue reading
Your chance to hear Dr C Stephen Foster
Back in March the world renowned uveitis expert, Dr C Stephen Foster M.D from the Ocular Immunology and Uveitis Foundation, MERSI, Boston http://www.mersi.us gave a lecture at Gresham College, London, on Inflammatory Eye Disease. It was part of the series that Professor William Ayliffe is giving about the Eye, Vision and Perception.
For those who were unlucky and missed it, here is a link to the audio clip of Dr Stephen Foster’s Gresham Lecture.
A few members of Birdshot Uveitis Society decided to meet up and go to the lecture together. For most of us it was the first time we had ever met another person with birdshot. One member wrote to us afterwards and said he was surprised what a positive effect this meeting had on him. This is what he said:-
“I just wanted to say thank you for alerting me to the talk by Dr Foster which despite the pictures was most interesting. I also wanted to say how great it was to meet others with Birdshot. I didn’t think it would make much difference, psychologically, to meet others with the same condition.
I realise now that it has made a big difference and that I got a sense of relief knowing that there are others out there going through the same, and worse (or better), than me. I hadn’t expected the feeling to be quite so strong. ”
We are very much hoping that others will feel the same and benefit by coming along to the Birdshot Day we are holding on September 11th. See Patient Day for further details.
Annie and Rea
AIN457 from Novartis
We would be interested to learn more about this new drug which is currently being used in a number of studies in the US and we understand that studies in the UK will commence soon. We searched for uveitis research on the Novartis site and came up with the following link http://www.clinicaltrials.gov/ct2/show/NCT00685399?term=novartis&cond=%22Uveitis%22&rank=8
We checked the MERSI website and found that a proof-of-concept study sponsored by Novartis, was carried out in MERSI in Boston US. The purpose of the study was to determine the safety of AIN457 in patients with uveitis and to investigate whether an antibody like AIN 457, which neutralizes the cytokine IL-17A, will safely reduce the intraocular inflammation associated with non-infectious uveitis. Data collected during Phase I of the trial is extremely promising and as a result, Novartis has amended the study protocol to allow more patients to enroll.
A multi-center, international placebo controlled study sponsored by Novartis to determine the difference in the rate of recurrent exacerbations in Behçet’s patients treated with AIN457 versus those given placebo or standard of care immunosuppressive therapy.
The study medication for this trial is identical to that of the Novartis AIN457 trial with the only difference being the delivery method. The preliminary proof of concept trial studying the AIN457 antibody yielded promising data and has resulted in new studies which target specific ocular inflammatory diseases such as Behçet’s.
It is possible that this drug may help people with Birdshot and we will keep a look out for updates about this.
Publicising the Birdshot Day and BUS
We have been advertising the Birdshot Day and our website in as many places as possible, as we want everyone who has birdshot, their families and friends and health care professionals with an interest in the condition, to have the opportunity to come to participate and learn.
Graphic Artist David Bethell has designed another superb poster specifically to advertise the day. Please contact us at Birdshot@live.co.uk if you would like a copy of the poster to display in the eye clinic (you will need to ensure you give it to the right person to get it displayed). If you prefer you can download the poster from the site and print copies. We have a choice of colour or black and white.
We need your help to make sure the Birdshot Day is widely publicised in the right places.
We now have links to the Birdshot Uveitis Society’s website on a growing number of national and international sites as well as sites such as Facebook, Wikipaedia, Rareshare, Birdshot lefora forum and a many more. If you have ideas about other places we should advertise our Birdshot Uveitis Society website and the Birdshot Day, we would be grateful for your suggestions.
Below are a number of links to sites where the Birdshot Uveitis Society is mentioned.
Many thanks. Annie
Article in Orphanet News April 21st about the Patient Day
RNIB – Rare Diseases and the Events listing
Unintended effects of Statins
Rea came across this piece of research, published in the BMJ last week, which highlights increased risk of liver/kidney damage and myopathy and cataracts from taking statins. The research highlights some of the possible side effects of taking higher doses of statins.
As a result of this, Doctors are being urged to choose the lowest possible dose when they prescribe cholesterol lowering statins.
If you currently take statins you may wish to review this with your GP and Ophthalmologist, discuss the benefits against the risks to find out if drug you are prescribed should be changed.
The link below takes you to the published paper.
Smoking
Recent research has shown that individuals who smoke have a 2.2 times higher odds than those who had never smoked of having ocular inflammation, with all anatomic subtypes of uveitis associated with a positive smoking history.
In the study, a positive smoking history had an odds ratio of 1.7 (P =.002) for anterior uveitis; 2.7 (P = .005) for intermediate uveitis; 3.2 (P = .014) for posterior uveitis; and 3.9 (P < .001) for panuveitis.
The odds ratio for panuveitis and cystoid macular edema (CME) was 8.0; for those without CME, it was 3.1, according to the study.
“A history of smoking is significantly associated with all anatomic subtypes of uveitis and infectious uveitis,” the study authors said.
“The association was greater in patients with intermediate uveitis and panuveitis with CME compared with those without CME. In view of the known risks of smoking, these findings, if replicated, would give an additional reason to recommend smoking cessation in patients with uveitis.”
The retrospective case-control medical record review looked at 564 patients who had ocular inflammation and 564 randomly selected eyeclinic subjects. All patients were seen at the Proctor Medical Group between 2002 and 2009.
The study employed a logistic regression analysis. Ocular inflammationwas the main outcome variable, and smoking was the main predictor variable variable, with adjustments for age, gender, race and median income.
So if you are a smoker and you have birdshot, you know what you should be trying to do! It’s obvious smoking can’t help.
Ophthalmology. 2010;117(3):585-590.
Vitamin B1
We came across an article about Vitamin B1 and how it might be helpful in treating common cause of blindness.
http://www.india-server.com/news/vitamin-b1-can-be-helpful-in-treating-7032.html
“According to a research team led by an Indian origin scientist, vitamin B1 can be effective in treating common cause of blindness. The scientists claimed that supplementation of a particular type of vitamin B1 known as benfotiamene can significantly treat uveitis, which causes blindness in human eyes. Uveitis is a malady that causes inflammation of the tissue located just below the outer surface of the eyeball. If the disease is not treated properly, it can cause blindness. › Continue reading
Ability Net
If you struggle with your computer because of your visual problems I definitely recommend you visit Ability Net and follow the links about My computer My way. › Continue reading