Carlos Pavesio, consultant ophthalmologist is interviewed at the Birdshot Day, 11th September 2010, by Mikael Porath-Petersen about this rare sight threatening eye condition. (18 mins.
Carlos Pavesio talks about Birdshot
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AIN 457 Study – my personal experience
Could this be the answer?
From a personal perspective, Nick tells his story about his experience on the Phase 3 Novartis AIN457 Study
“I’m really happy to bring some good news. I’ve been taking part in the Study of a new treatment for the last 6 months and it seems to be working. I’ve been off all other meds for 2 months now without any sign of a flair-up and my doctors agree that the new treatment seems to be controlling the disease.
AIN457 is a new drug in the final stage of trials to treat a number of different inflammatory conditions. It has been created by the Swiss company Novartis and is a fully human antibody to Interleukin 17a – a messenger in the immune system which is thought to be responsible for a number of auto-immune conditions including Birdshot. Continue reading
People with Birdshot talk….(2010)
It’s a frustrating fact that diagnosis for Birdshot is not easy, even for the experts. That’s why it takes so many of us a long time before we eventually get told what is wrong with our eyes, and even then, sometimes we get told later on, that actually after all it’s not Birdshot, but something else which more than likely needs equally aggressive treatment. Dagmar of Birdshot Lefora website reminds us that we need to remember that:-
“There is NO single test/indicator/marker for birdshot, although everyone seems to think the HLA A29 positive is. It is not. Just one of many areas a good diagnostician will ponder. We all want an answer and the reality is, for some, there is not a definite yes or no as to their diagnosis.
Uveitis = inflammation of the uvea, something has caused that inflammation. Therefore, having uveitis indicates there is something else wrong; there are about 60 or so conditions that are identified as causing uveitis, and for a quite few, the diagnosis is ideopathic or cause unknown. Our ophthalmologists are just like a lawyer who is building a case, bit by bit, with each piece of evidence to draw a conclusion.”
Here are 3 short interviews people with birdshot who attended the Birdshot Day back in September 2010.
Mrs Birdshot has had Birdshot for over thirty years. It took a long while for her to be diagnosed and over the years has received a number of different treatments, some more successful than others. Her’s is a positive story. She has maintained her vision and she doesn’t regard herself as ill and doesn’t want to be thought of as a patient. She wants to have a partnership approach to her treatment with her doctor.
https://audiomack.com/embed/birdshot-recordings/song/mrs-birdshot
Carole’s story is similar to Annie’s. She has been treated for a number of years and has maintained reasonable vision.
https://audiomack.com/embed/birdshot-recordings/song/carole
Lesley is a young woman who has been treated for her Birdshot for over 10 years. She’s had a tough time finding the right treatment for her Birdshot and her arthritis, but her current medication is controlling both and she couldn’t be happier.
Happy Christmas 2010
Dear Members and Friends and Supporters,
We would like to thank you for having helped BUS grow and develop. We don’t think there is any ophthalmologist in the UK who does not know about Birdshot now! We could not have done this without your help and support. 2011 is going to be a great year for us – if we get the research moving quickly, we could be looking at better, more effective medication regimes for us – and maybe even prevention of Birdshot for future generations!
We need your continued support – please let us know if you would like to get more involved in 2011, and let us know what your priorities are for 2011.
Merry Christmas and a very happy, healthy and prosperous New Year to all our members, friends and fans
Rea and Annie
PS an especially big thank you to David our graphic designer who came up with this unique and striking interpretation of the Christmas robin for our very first Christmas card. We didn’t even have to ask! Thanks David you’re a star.
New research into how we see
Our eyes see the world in previously unsuspected ways, say scientists
A type of nerve cell in the retina of the eye may have a more sophisticated role in vision than we thought, a finding that may lead to treatments for some kinds of blindness
To read more about this follow the link to the article in the The Guardian Newspaper 7th December 2010. A scientific breath through in the understanding of how light sensitive proteins (melanopsins) relay visual information of the brain could lead to new treatments for blindness caused by degradation of rods and cones inside the eye.
http://www.guardian.co.uk/science/2010/dec/07/eyes-nerve-cell-vision-melanopsin?INTCMP=SRCH
Rare Diseases UK News
Many people with a Birdshot diagnosis will be familiar with some of the problems highlighted below. We believe that BUS and its members can make a difference and help get better treatment for our particular rare disease. But it is only by working together.
Below is Rare Disease UK’s latest newsletter and link to a recent report about rare diseases which may be of interest to you. Continue reading
GPs get biologic drugs guidance
Rea spotted this bit of news today about biologics, which can be used to treat special cases of Birdshot where other drugs fail. It opens up another possibility if the more usual treatments fail or if you suffer from very bad side effects. We know of cases where adalimumab, infliximab have been prescribed. Continue reading
NIHR & UCL Institute of Ophthalmology
We previously told you that we had been invited by Moorfields to attend the symposium of the NIHR Specialist Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology. Here is a brief report. We had the chance to meet many leading people involved in eye research, clinical ophthalmology and wider health research, including those pictured below. We were introduced to Professor Dame Sally Davies by Professor Khaw and discussed patient participation in research. It is good to know that the current Chief Medical Officer is now very aware of the BUS /Moorfields activities.
Donating Eyes
We talked to Professor Luthert about the possibilities of people with Birdshot donating their eyes in the future for research. Here Narciss Okhravi answers the question posed by one of the delegates at the Birdshot Day, who wanted to know what she should do if she wanted her eyes to be donated to research after she has died. BUS is now following this up to find out how to enable this. Continue reading
Give via your on-line Christmas shopping
Thinking about doing your Christmas shopping online? You might like to use the Easyfundraising site to do this. This is an excellent, easy, on-line way to help raise money for future research and Birdshot days, while you do your normal on-line Christmas shopping and it doesn’t cost you anything. Retailers such as Amazon, Next, Argos, John Lewis, Comet, iTunes, eBay, M&S and HMV, all give money when you shop-online via Easy-Fundraising. You shop directly with the retailer as you would normally do, but if you sign up to http://www.easyfundraising.org.uk/bus for free and use the links on the easyfundraising site to take you to the retailer before you shop, then a percentage of whatever you spend comes directly to us at no extra cost to yourself. This service is FREE to use and will give you access to hundreds of exclusive discounts and voucher codes, so not only will you be helping us while you buy your Christmas presents, you will also help to save money yourself.
Please support the petition!
We are members of EURODIS via the Uveitis information Group. We would like to ask our members to consider signing an appeal in support of the Telethon. Over 1,800 people have already signed and it is of utmost importance to reach 5,000 signatures!
The Telethon is organised by the AFM, the French Muscular Dystrophy Association. Although the Telethon is run in their name it raises over 100 million euros for research and services to aid the lives of people living with Rare Diseases generally.
Certain groups have for some time declared that the French Telethon supports only one disease area, this is not true. The AFM Telethon contributes yearly to the French Rare Disease Alliance, EURORDIS and Orphanet, it supports vital services and funds medical research programmes covering many rare diseases. In fact a number of European researchers work in collaboration with those funded through the Telethon, so any threat to this event will impact on the development of rare disease research right across the continent and beyond.
Thanks to the AFM Telethon:
- 2,700 genes identified
- 34 clinical trials ongoing
With this in mind, we ask you to sign our appeal at
http://telethon.soutien.eurordis.org/en