Why changing your diet could help control Birdshot Uveitis

This is the first in a series of 3 posts about diet.   It is written by  BUS member  Nick Bucknall.  Nick is not a nutritionalist but he has taken a great interest in his own diet and and how it might possibly affect his eyes. The article is based on the information that he researched for the “Food and Supplements” stall that he and his wife Caroline ran at the 2nd Birdshot day last March.  Here he explains why he believes that changing your diet could help you control Birdshot.

“Birdshot is one of many inflammatory, auto-immune conditions. It is rare but seems to have much in common with more frequently encountered conditions such as rheumatoid arthritis, Crohn’s Disease, Lupus and Psoriasis – certainly the same drugs are widely used in treatment. It also seems good sense to find out what else besides these drugs has benefited people with these similar conditions – after all, there are literally millions of ‘them’ and only a few thousand of ‘us’.

Birdshot is also relatively new. As far as we know, we are the first generations to be affected, and it has only been observed in people living a modern lifestyle in the developed world. Nobody knows what triggers Birdshot but it is difficult not to wonder if a modern disease might not have a modern trigger?

Obviously, much research needs to be done but if we look to our fellow sufferers of auto-immune, inflammatory disease, the overwhelming advice seems to be that inflammatory conditions can be helped by close attention to diet.

I know a healthy lifestyle and diet are not a substitute for medical treatment but can greatly reduce our dependence on it. We all benefit from a healthy lifestyle – regular meals, exercise in the fresh air, a good night’s sleep and the avoidance of stress, etc.

“We are what we eat” is a cliché, but it is hard to dismiss when so many people have found relief from their symptoms by avoiding the known ‘inflammatory’ foods and seeking out the known ‘ anti-inflammatory’ foods. You could call this a ‘therapeutic’ diet, which is to say it’s a healthy diet with adjustments to reduce inflammatory elements. It isn’t difficult, it isn’t expensive. It may help and certainly won’t harm us. Worth a try? I thought so, and sincerely believe I have benefited.”

Nick’s second post which follows talks about how to make your diet less inflammatory.   the foods to avoid and  ones to eat lots of.

Nick’s third post is about supplements that might improve eye health

 

 

 

 

Winter Benefit – tickets now available!

We are thrilled to announce that tickets are now available for our first Winter Benefit – it promises to be a fun evening and a great excuse to get together, party and raise much-needed funds.

DATE:            Saturday 3rd November

VENUE:        The Rifles Club,52-56 Davies Street,London W1K

TICKETS:     £80 each

The evening will commence at 7.30pm with a champagne & canapé reception, followed by a three course dinner with wine, and dancing until the early hours!

Fundraising activities during the night will include a silent auction and raffle. We are looking for companies to help sponsor the event and also for prizes, so if anyone has suggestions for either or if you would like to order tickets please contact either lorraine@birdshot.org.uk or suew@birdshot.org.uk

We look forward to seeing you there!

Easyfundraising.org.uk – please sign up and raise funds for free!

This website does exactly what it says – you can raise money for BUS every time you shop online and it won’t cost you anything, it’s that easy! Simply sign up at www.easyfundraising.org.uk and specify “Birdshot Uveitis Society” as the charity for which you are raising funds, then every time you make any purchase online you just need to do so via the easyfundraising website and the retailer will automatically make a donation to BUS. There is absolutely no cost to you, the site covers all of the major online retailers, and BUS benefits from a donation.

I recently booked the flights for a family holiday this way and we just got a donation of £17.85!

Please, if you do even a little shopping online, sign up today, we really do need your help!

Microneedles improve drug delivery

Recently New Zealand member Matt drew BUS’s attention to  research into the use of micro needle technology for the delivery of therapeutic drugs to the back of the eye . This link that takes you to the article found in “Gizmag”.

This procedure has yet to be trialled on humans, but if it works as it does in the animal study, it  could well open the door for better treatment via eye injections.   It should provide a less invasive and more targeted way of getting injections into the eye, and will open the way for slow-release drug design. Of particular note,  the injected molecules did not reach the lens or front part of the eye in significant amounts decreasing the chances of side effects such as cataracts which commonly occur with this type of treatment.

Details of the study were published in the July 2012 issue of the “Journal Investigative Ophthalmology and Visual Science” where you can read the abstract for free, but you need to pay or be a member to access the full paper.

Authors:  Samirkumar R. Patel1,Damian E. Berezovsky2,Bernard E. McCarey2,Vladimir Zarnitsyn1, Henry F. Edelhauser2 and Mark R. Prausnitz1  from the School of Chemical and Biomolecular Engineering, Georgia Institute of Technology, Atlanta, Georgia (1) ; and Emory Eye Center, Emory University School of Medicine, Atlanta, Georgia (2).

 

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