Please see the poster below which advertises a forthcoming patient day in Edinburgh. We thought scottish members of BUS might be interested in this. Continue reading
Uveitis Day in Edinburgh 8th September 2012
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Yearly Archives: 2012
Local PINGU meeting 2nd October 2012 – Birmingham
Consultants Alastair Denniston and Professor Phil Murray with Research Nurse Sue Southworth from Birmingham, have recently established a local uveitis group, called PINGU. In case you wonder, PINGU stands for Patient Involvement Group for Uveitis. What a great name! A few of our members may already come across this Birmingham Midland Eye Centre initiative.
The next meeting will be held on Tuesday 2nd October at 7.00 and the focus will be “What is uveitis and how can we find out more?” This is their 2nd meeting and if things go well they plan to meet every 6 months.
By attending these meetings you will get more involved in your treatment at Birmingham and help clinicians there provide better services to you. Everyone with Uveitis including Birdshot Uveitis are welcome to attend, but please drop us an email and let us know and we will pass on your contact details to Sue Southworth from Birmingham so that the team know in advance the likely numbers. For further information you can also contact Sue direct by email: sue.southworth@nhs.net.
Nick Bucknall, one of our active BUS members has been involved in helping the Birmingham consultants set this local meeting up and he will very pleased to meet other members of BUS in October.
The meeting will be held at the Birmingham Midland Eye Centre.
New BUS Fundraising Brochure
We have a brand new fundraising brochure, pictured below. The brochure was designed by Alison from John F Hunt – thanks to BUS member John Hall, who is also one of our Directors. Printing costs were sponsored by Premier Print and Promotions Ltd. It clearly and simply explains Birdshot, why we need to raise funds for research and the work of BUS. We are so grateful to John Hall, Alison Sherring and Premier Print for providing this brochure at no cost to BUS.
The brochure can also be used by all of us to help raise the profile of Birdshot. It can also help to explain Birdshot Uveitis to your friends, family members, work colleagues and all those NHS and health professionals who you come in contact with. You may want to give some copies to your optician or GP, so that we can get Birdshot better known.
Please let us know if you would like copies to help you with this and with your fund-raising efforts.
New Birdshot Uveitis Poster for Hospital Eye Clinics
BUS would like to support everyone who has been newly diagnosed with Birdshot. We want them to know that BUS is here to see them through their Birdshot journey and to help them with useful information and practical advice. BUS’s designer, David Bethell has produced a clear, eye catching poster which should stand out well on the walls and display boards of eye clinics.
If you are prepared to be our postman to make sure that the poster gets displayed in your local eye clinic and ERG department, please let us know, and we can provide you with the poster for you to ensure it is displayed prominently in your clinic. We know, from previous experience, that this is often a more effective way of getting the posters displayed.
You might like to ask your Optician or Doctors if they are also willing to display it. The poster’s size is A4 so it will not take up too much space on the clinics display area. You can help us to get Birdshot Uveitis better known by making sure that the poster can be seen!
Annie and Rea
Help Us Make Birdshot a Priority For Research!
We are re-posting this, as the survey ends on 31 July, and we need as many responses as we can get, in order to make sure that Birdshot becomes a priority for research. If you have not already done so, please complete this survey. It is quick and simple to do. We have posted some ideas about what kind of research is needed into Birdshot at the end of this post, to help stimulate debate, and give you some ideas. Remember that the more people who respond mentioning Birdshot, the more likely we are to get Birdshot as a priority!
The Sight Loss and Vision Survey is a joint initiative between Fight for Sight, The Royal College of Ophthalmologists, The College of Optometrists, the National Institute of Health Research, RNIB and The James Lind Alliance. It has been set up to find those areas of research that have not yet been identified. For us with Birdshot, this is really important, as we have a rare disease, and very little research has been carried out to date. This is our opportunity to get Birdshot (and other rare, auto-immune forms of posterior uveitis) on the national agenda. Because the survey will be completed by patients, it will have great credibility and it is hoped that funds can then be identified for some of the research needs.
The James Lind Alliance is a non-profit making organisation, funded by the National Institute for Health Research, which will oversee this initiative ensuring the exercise produces an unbiased result, with equal weighting being given to each of the participating groups – so your opinion really will count.
The Sight Loss and Vision Survey will allow you to identify your most pressing questions about the prevention, diagnosis and treatment of Birdshot.
The more Birdshotters that complete the survey the more likely we are to be able to influence the research agenda and receive valuable funding from the government for research into Birdshot – we really do need you to take part.
To complete the survey and learn more about this initiative please visit www.sightlosspsp.org.uk where you will find both the online survey and can request alternative formats – post/fax or telephone.
The survey takes less than 10 minutes to complete so please take this opportunity to represent Birdshot and help change the future of eye research.
Thank you!
1. What causes Birdshot?
2. Which part of the immune system becomes disregulated?
3. How do you re-regulate the immune system without damaging the body?
4. How can we find less toxic medication that does not adversely affect mental health and quality of life, but preserves vision?
5. How can we ensure early detection of Birdshot to prevent sight loss?
6. What are the genetic links and why are several generations of some families affected, and why does it seem to affect mainly Caucasians?
7. Why is there a ‘spectrum’ of Birdshot?
8. Why do different people respond differently to different medication regimes?
9. Why is Birdshot treated systemically with toxic medications which adversely affect mental health and quality of life, when it seems to be confined to the eyes?
10.What does the link to HLA A29 mean in relation to treatment?
11. What is the risk/benefit analysis of toxic treatment to prevent blindness versus blindness?
12. What are the long term costs to health and social care of blindness which could have been prevented through the use of off license or off label medications?
13. Is Birdshot best treated by ophthalmologists or should a clinical specialism of immunology be developed?
14. Can holistic therapies such as acupuncture, meditation, hypnotherapy help in preventing or treating Birdshot?
15. Can supplements, such as vitamin D or other therapies treat Birdshot less toxically than current medications?
Accessing unlicensed medications
The Medicines and Healthcare products Regulatory Agency (MHRA) is the agency that regulates all new medicines. They weigh up the risks and benefits of each new medicine, following the completion of phase III trials and then decide whether to license it or not. Some of us with Birdshot will know that we are unable to get some medications that may be licensed elsewhere (e.g. in the US) or that have been tested at phase III trials, but have to go through the sometimes lengthy procedure to be licensed.
The MHRA is now consulting on whether they should provide early access to medicines before they are formally licensed. The consultation period ends on 5 October, and if the MHRA goes ahead with this scheme, it may mean that those of us who have tried all the more traditional approaches to controlling our Birdshot without success can get hold of newer medications earlier.
There are a few provisos, of course! The scheme will be voluntary and limited to medicines that show a “significant advance in treatment in an area of unmet need”. The MHRA also expects to limit the scheme to only one or two medicines each year. Finally, the scheme will be limited to those medicines that have reached phase III trials (apart from exceptional cases – yet to be defined). If this scheme goes ahead, the MHRA will provide an opinion of the risks and benefits of the medicine on its web site to help clinicians and patients decide, and it would then be up to the funding body (your local clinical commissioning group made up of GPs in your area; or specialist commissioning group) to decide whether to fund the medicine or not.
So, even if the scheme is launched, there will still be hurdles to jump over, but at least it provides hope for those of us who are struggling to get hold of medicines on the NHS which are not licensed here.
It would be really, really helpful if our patient and professional members could give their comments to the MHRA
To read more about the proposed scheme, please click on the link below:
http://www.mhra.gov.uk/NewsCentre/Pressreleases/CON174774
If you want to give your comment on this scheme, you can email earlyaccess@mhra.gsi.gov.uk by 5 October 2012
Fight for OUR Sight – support the Carrots Nightwalk
On Friday 21st September 2012, Birdshotters and their friends are joining with Fight for Sight on the Carrots Night Walk. Already, because of the efforts of just a few of our group, friends and family, over £2,000 has been raised. Our target is £12,000, so we have quite a way to go. If you are able to take part in the walk, and help raise funds, please let us know as soon as possible.
If you are not able to take part in the walk, please support our efforts by donating to our team of walkers via the special team fund raising page at Just Giving.
Funds raised will go towards much needed research on Birdshot – hopefully we can find better treatments and maybe even a cure or prevention of Birdshot. We would be grateful for any donation – even very small amounts make a huge difference. We have 300 members, and if each of those were able to donate just £10 we would be able to find £3,000 for research. This is OUR future and the future of the next generation – hopefully they will not have to suffer Birdshot! So please turn out your pockets and make a small donation, especially if you are not able to join us on the actual walk yourself.
Thank you in advance for any small amount you are able to donate, and a HUGE thank you to our members from the UK, Ireland, Canada, USA and Australia who have already donated to this cause – you are stars!
So please dig deep and donate now.
Experimental models of autoimmune inflammatory ocular diseases.
This recent review is from the Brazilian journal Arq. Bras. Oftalmol. 2012 Apr; vol. 75(2) pp. 143-7 For those with a scientific/medical background, the whole of paper can be found at the following link. http://www.scielo.br/scielo.php?pid=0004-2749&script=sci_issues
The review, written by medics, ophthalmologists and students, describes the main experimental models of autoimmune ocular inflammatory diseases. The hope is that by better understanding the process of autoimmune ocular inflammation in animal models, it will lead to a better understanding of human ocular inflammation.
The paper concludes that the current and new models experimental models being developed may help us to develop new therapies with fewer side effects or new ways of delivering therapies.
Exciting news – there seems to be so much work going on around autoimmune posterior uveitis. For those of you who want a fuller read, we reproduce the conclusion of the review below:
CONCLUSION
“Researches on experimental models have been important to explain the pathophysiological mechanisms involved in different ocular autoimmune inflammatory diseases. EAU is one of the most used animal models. After immunization with uveitogenic antigens, animals develop an immune response mediated primarily by CD4+ T cells. Clinical findings are somewhat similar to some human autoimmune uveitis. Even though these models contribute for a better understanding of the pathophysiology of autoimmune uveitis in humans, there are still many questions to be answered, such as triggers, recurrences, and individual susceptibility. Heterogeneous clinical findings may be related to the observation that each subject may respond to more than one epitope per antigen and respond differently to each one of them, depending on how it is presented and how it is recognized by the immune system.
Lately, new ocular inflammatory experimental models have been available due to the advances in genetics and molecular engineering. These models may help the development of news therapies, with more specific and efficient drugs, avoiding side effects. In addition, animal models are important for the study of new routes of drug delivery, especially by intravitreal injection.
Help change your future!
We are posting this again and hope that if you have not already completed this short survey you can find the time to do it. Your help with this survey could help change future treatment for all Birdshotters!
Rea and Annie
The Sight Loss and Vision Survey is a joint initiative between Fight for Sight, The Royal College of Ophthalmologists, The College of Optometrists, the National Institute of Health Research, RNIB and The James Lind Alliance. It has been set up to find those areas of research that have not yet been identified. For us with Birdshot, this is really important, as we have a rare disease, and very little research has been carried out to date. This is our opportunity to get Birdshot (and other rare, auto-immune forms of posterior uveitis) on the national agenda. Because the survey will be completed by patients, it will have great credibility and it is hoped that funds can then be identified for some of the research needs.
The James Lind Alliance is a non-profit making organisation, funded by the National Institute for Health Research, which will oversee this initiative ensuring the exercise produces an unbiased result, with equal weighting being given to each of the participating groups – so your opinion really will count.
The Sight Loss and Vision Survey will allow you to identify your most pressing questions about the prevention, diagnosis and treatment of Birdshot.
The more Birdshotters that complete the survey the more likely we are to be able to influence the research agenda and receive valuable funding from the government for research into Birdshot – we really do need you to take part.
To complete the survey and learn more about this initiative please visit www.sightlosspsp.org.uk where you will find both the online survey and can request alternative formats – post/fax or telephone.
The survey takes less than 10 minutes to complete so please take this opportunity to represent Birdshot and help change the future of eye research.
Thank you!
Uveitis and stress
Many of us believe that stress may be a contributory factor in our Birdshot and in flare-ups. Stress has been linked to auto-immune diseases and it is commonly thought that there is a stress relationship with flare-ups in other forms of Uveitis.
A paper by R Khanfer , G Wallace, P A Keane, and A C Phillips has reviewed what is currently known about the relationship between uveitis and psychological stress.
Birdshot Uveitis Society knows two of the authors well. Dr Graham Wallace was one of the speakers at our last Birdshot Day, and Pearse Keane, whilst unable to attend the Day, has been a key professional working in the field of Birdshot, and will be attending our next Day. Pearse was introduced to us by BUS member Nick Bucknall and consultant Alastair Denniston. Both Pearse and Alastair are very interested in OCT imaging in relation to Birdshot Uveitis and have been working on research in this field as well.
Here is an abstract from the paper:
“Uveitis is an inflammatory condition affecting the eye and is often associated with systemic autoimmune disease. A role for the involvement of psychological stress in autoimmune disease has been widely demonstrated. However, uveitis is not classified as an autoimmune disease, and a definite or direct cause has yet to be identified, although infection may be involved. Many uveitis patients retrospectively report stressful life events occurring prior to the onset or recurrence of uveitis. However, only a small number of studies have explored the potential association between psychological stress and uveitis, and their findings are somewhat contradictory, many showing that the experience of uveitis itself results in stress. ”
It is really interesting to see this piece of research, and our own quality of life survey should help to begin to answer some of the questions: Is it stress that helps trigger Birdshot (or the severity of Birdshot) or Birdshot that triggers stress or medication that leads to stress and causes flare ups?
Read the full article at the link below.
PMID: 22685876
URL – http://www.ncbi.nlm.nih.gov/pubmed/22685876?dopt=Citation