Carrots NightWalk 2014

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BUS is delighted to announce that we are once again a partner charity involved in the Fight for Sight Carrots NightWalks. These fun night-time sponsored walks are helping to raise thousands of pounds for research to prevent sight loss and to treat eye disease. Fight for Sight small grants awards have already benefited birdshot research. Continue reading

Birdshot support groups grow

Facebook Birdshot Group

The Birdshot Uveitis Society International facebook group has become super active over the last few months.  Its membership has more than doubled with a membership of circa 150,  involved in numerous discussion threads where people are able to chat about their Birdshot, get support from others with the condition or even just have a moan!    If you haven’t visited the group and want to share information with other birdshot sufferers, you can drop in at https://www.facebook.com/groups/Birdshot/. It’s very easy to ask  and answer questions and keep in touch.   Although it  is not as private a discussion venue as the BUS Birdshot forum, (where you have to be a member and logged in to see the posts,) people seem to like the familiar facebook format.  There is real sense of camaraderie amongst a growing international community.

Birdshot Monthly Conference Calls

The US based Birdshot forum started by Dagmar many years ago, has recently moved the support site to http://Birdshot.info.  Dagmar has also set up regular monthly conference calls which people in US and Canada can join free of charge.  I believe it is possible for “Nightbirds” in the UK who are awake at 2.00am  to join via SKYPE, but you will need to ask Dagmar for the details.   They are on the 2nd Thursday of each month and the next few dates are:

  • 8th May 2014
  • 12th June 2014
  • 10th July 2014
  • 14th August 2014
  • 11th September 2014
  • 9th October 2014
  • 13th November 2014
  • 11th December 2014

London Social Event

The next Birdshot event in London,  UK, on Saturday 3rd May is a “social’ on the beautiful Thames Barge, The Phoenician .    So far 26 people have confirmed their attendance but we have space for a few more so it is not too late to say you would like to come.  Please contact BUS for details.  We are delighted to  have Professor Glen Jeffery coming along to give us a quick update on his research work at Moorfields, which  BUS has helped to fund.  We also hope to be able to demonstrate the handheld ERG scanner which is being used in the research trial.

T cells found in the retina and choroid of Birdshot patients

Jonas Kuiper from Holland recently contacted us to let us know that a research paper on the characterization of Immune cells in the eye of two birdshot patients has recently been published.  They successfully  identified that the infiltrated cells are predominantly T cells and that they are directed to both retina and choroid. Although this has been assumed for decades, this research provided the first evidence that T cells directed against the eye are present in the eyes of birdshot patients. http://www.ncbi.nlm.nih.gov/pubmed/24530754.

Diagnosis and Treatment of Birdshot Retinochoroidopathy

Birdshot retinochoroidopathy requires early therapy to limit damage, preserve vision and induce long-term remission.

Akbar Shakoor, MD, and Albert T. Vitale MD, Salt Lake City

- See more at: http://www.revophth.com/content/d/retinal_insider/c/42258/#sthash.UodcC2eS.dpuf

Albert Vitale was one of the speakers at the International Birdshot Symposium held in Boston, USA in September 2013.

The Research paper which we link to below was published in May 2013.  It  concludes that Birdshot retinochoroidopathy requires early therapy to limit damage, preserve vision and induce long-term remission.  Published in the “Review of Ophthalmology” the paper is by Akbar Shakoor, MD, and Albert T. Vitale MD, Salt Lake City

- See more at: http://www.revophth.com/content/d/retinal_insider/c/42258/

The paper clearly makes the important point that:

“few patients maintain good visual acuity without treatment, with a 20 percent, five-year cumulative incidence of visual acuity of less than 20/200. Visual acuity may be limited by vitritis, cataract and cystoid macular edema, but the later phases of the disease are marked by significant photoreceptor loss and attenuation of electroretinographic amplitudes.”

It goes on to describe various treatments, comparing success rates.  In relation to steroid mono therapy, however it is delivered he says:-

While periocular, ocular, intravitreal and systemic corticosteroids may be effective in the short-term management of vitritis and macular edema, they are of inconsistent efficacy in the long run. Unacceptably high maintenance doses of prednisone are required, resulting in frequent development of serious adverse effects when used as chronic monotherapy.

 

So if you are only being treated with steroids and are having this experience, it is a useful article to share with your specialist.      Annie

 

 

 

 

Rare Diseases Day Invitation

Genetic Alliance in partnership with Alexion Pharma have  now successfully raised 2000 hands to feature on a sculpture being made for Rare Disease Day.  They are now extending an invitation to BUS  members (amongst others with a rare disease) to come along to the launch which takes place at London’s Science Museum on 28th February from 12.00 – 14.00.

“The Genetic Alliance and Alexion Pharma would like to invite you to an event at The Science Museum on Rare Disease Day 2014 from noon to 2pm to unveil a statue depicting the support of the general public and well known people such as Jenny Agutter for people with rare diseases. With the launch of the Rare Diseases Strategy last week, and the involvement of high profile people such as Jenny and many others, the issue is one which is gaining much attention at the moment.

For every pledge made on the campaign website, a hand – the symbol of Rare Disease Day – will be created and an art installation has been commissioned to transform all the hands into a visual illustration of the commitment to raise awareness of rare diseases. The target of 2,000 pledges this year has been reached.  The UK-based artist who is creating this work, Lisa Price, was chosen earlier this year in a competition run by the campaign organisers, The Genetic Alliance.

The sculpture will go on tour around the country in hospitals and schools to continue to raise awareness of this important cause.

Journalists and celebrities who have supported our campaign will be attending the event.”

Please see attached for a copy of your invitation and if you would like to attend quickly email: JohnsonS@alxn.com.  Numbers are limited, so contact the organisers today, if you would like to go along.  Birdshot Uveitis Society will feature in the press pack which will be presented to the journalists attending.

As part of the raising awareness campaign, the press have been invited along, and BUS will be featured in the press pack that they handing out.  So please do look out for mentions in the press.

Progress with stem cell research

Birdshot Uveitis Society has noticed that there have been a lot of new development on stem cell research in the news lately which offer new hope to those whose rods and cones are losing their function.  Here are a few examples which caught our eye in January and which offer hope for Birdshotters in the future:- Continue reading

Intravitreal bevacizumab (Avastin®) versus triamcinolone (Volon A®)

Birdshotters who have been receiving Avastin® to deal with their macula oedema will no doubt be interested to read the results of this recent study which compares intravitreal bevacizumab (Avastin®) versus the steroid triamcinolone.  The trial in question concerned people with diabetic macula oedema. Continue reading

Staying well on immunosuppressive therapy

We are often approached by people who are clearly worried about starting treatment for their birdshot. Because of this, we decided to publish a ‘question and answer’ section on the website. We hope it will provide you with some much-needed reassurance and answers to many of your questions.

Much of the ‘question and answer’ section may appear to be just common sense, but BUS thought it useful to gather the information together in one place. We also hope it will be helpful to those who are newly diagnosed and who are looking for advice on how to stay well while on immunosuppressive therapy.

Members of the the BUS Standing Advisory Committee and National Birdshot Research Network have been involved in validating this collected information.

If anything is not clear, or if you have other questions or concerns you would like to raise, please do not hesitate to get in touch.

The Q & A page can be found here.