Author Archives: Annie

A patients perspective – does anyone want to tell their story?

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BUS have been contacted by NB Magazine (the RNIB eye health and sight loss magazine for professionals), and asked if we have any member who might be interested in writing a short article about their experience of Birdshot Uveitis (just 800 words).    This regular column features  the experiences of people with sight loss, covering a different eye condition each time, and describing what it’s like to live with the condition, the support (or otherwise) they have met with along the way, including solutions they have found helpful and what constitutes an ‘ideal world’. It is also an opportunity to feature the work of self-help groups (ie will provide publicity for Birdshot Uveitis Society) .

If there are any members of BUS who would like to do this please get in touch with us as soon as possible.  Ideally they are hoping it can be done for 11th September deadline which is short notice!   info@birdshot.org.uk

Supplements to help with Birdshot Uveitis and Eye Health

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This is  the 3rd post on the subject of nutrition supplements and eye health from BUS member Nick Bucknall.  Here he talks about supplements that he believes are helping his eye health and Birdshot Uveitis.  To back up his ideas he provides links to related research papers.

“A balanced diet rich in fresh ingredients should provide most of the vitamins, minerals and trace elements needed for good health. But some of us are getting older or recovering from an illness, or have a natural imbalance, and we also have to deal with the side effects of medication, so if you wish to supplement your diet, here is a list of supplements I have tried and found to be beneficial.

NOTE:  The process of extracting the active ingredients from natural sources in order to manufacture dietary supplements may reduce their efficacy so make sure they are as fresh as possible.

Saffron

Saffron is widely used in some parts of the world to treat a variety of eye conditions. I find it gives a rapid improvement, reducing floaters and blurring within hours! It can be added to food as a cooking ingredient or added to tea or coffee. Put a little in the bottom of the cup and soak for a minute or two in hot water before pouring tea. Saffron is expensive but you only need a pinch in each cup – a gram (about £4.50) should last up to 2 weeks.

Here are links to 3 research papers about the benefits of Saffron for the retina – the part of the eye which is damaged by Birdshot.

http://www.ncbi.nlm.nih.gov/pubmed/20688744

http://www.iovs.org/content/49/3/1254.abstract

http://www.ncbi.nlm.nih.gov/pubmed/20951131

Tumeric

Turmeric (Curcumin) is a traditional remedy for uveitis and can either be used as an ingredient in cooking or can be taken in a capsule. It takes a few weeks to produce results but is very cheap.

For research, see http://www.ncbi.nlm.nih.gov/pubmed/18421073 and http://www.ncbi.nlm.nih.gov/pubmed/17569223

Psyllium husk

Psyllium husk is a natural product derived from plantain and is a dried source of fibre which slows digestive transit, protects the stomach lining and improves digestion. It can be taken as a food additive or in a drink – I take it with fruit squash and aloe vera juice. Some anecdotal evidence has suggested that gastric problems may be a trigger for Birdshot and this has also been mentioned by my eye specialist.

Aloe Vera

Aloe Vera juice is another natural anti- inflammatory. As well as helping digestion, it is also good for skin problems, digestive irritation and indigestion, all of which are common side effects of prednislone.

Omega-3 fish oil

Omega-3 fish (EPA) offers a range of benefits including skin, nerve function and is a powerful anti-inflammatory. If you eat oily fish regularly, you should be getting enough of this but taking it as supplement does no harm and may be helpful if you don’t like oily fish! Also, it’s a good source of vitamin D. For research, see: http://www.ncbi.nlm.nih.gov/pubmed/20664801

Glucosamine, Chondroitin & MSM

This anti inflammatory combination is often taken by arthritis sufferers but may also help with other inflammatory conditions like Birdshot. For research, see:http://www.ncbi.nlm.nih.gov/pubmed/18719082

Vitamin D

Recent research has shown vitamin D to be helpful in treating uveitis. We normally ingest it partly through eating the right foods (oily fish, almonds and green vegetables) and partly through sunlight which our bodies convert to vitamin D. It regulates levels of calcium and phosphate in the bloodstream and is closely linked to bone health. Recent research about the benefits of vitamin D for Birdshotters was discussed at the Birdshot Patient’s Day in March, and can their research paper can be found at: http://www.ncbi.nlm.nih.gov/pubmed/22217419

Pycnogenol

Pine bark extract is a powerful anti-inflammatory which has been shown to protect the retina. For research see:

http://www.ncbi.nlm.nih.gov/pubmed/19916788

NB also see comments below.

Benfotiamine

Vitamin B1 has been shown to be helpful in treating uveitis. For research see:

http://www.ncbi.nlm.nih.gov/pubmed?term=benfotiamine%20uveitis

Lutein

Lutein is a caratenoid found in green vegetables and is known to be good for the eyes. For research see

http://www.ncbi.nlm.nih.gov/pubmed/22465791?dopt=Citation

I take all these on a daily basis and feel that the results make it worth the trouble and expense – I have been in remission without any medication for nearly 2 years. But I still pay close attention to my diet – supplements cannot be a substitute for a good diet.

 

How to make your diet less inflammatory

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This is the 2nd article in a series of 3 about food and supplements by BUS member Nick Bucknall.

Below he lists some tips on how to make your diet less inflammatory.

  • Try to eat more fresh fruit & vegetables, whole grains like brown rice, wholemeal bread, fish and seafood, nuts & seeds. Broccoli, spinach and kale are very beneficial as are sweet potato, onion, garlic and ginger
  • Try to buy organic – insecticides, preservatives and other food additives may be inflammatory or even trigger Birdshot. Besides, organics taste better!
  • Avoid red meat and processed meat like bacon, sausages and salami. Cheap or takeaway chicken is likely to contain growth hormones and antibiotics – best avoided
  • Oily fish like wild salmon, mackerel or sardines are rich in omega-3 oils and are very beneficial as well as being a tasty alternative to meat
  • Choose fresh food over processed food, brown bread over white, hard cheese over soft
  • Drink green tea or filtered water rather than fizzy, sugary drinks and milky hot beverages
  •  Your choice of cooking oil can make a big difference – olive, rapeseed and grapeseed oils are all helpful, while sunflower, corn and groundnut oils are generally considered inflammatory
  • Most sources choose red wine over other alcoholic drinks, dark chocolate over milk chocolate, and low fat versions of all dairy products.
  • Foods best avoided altogether include fizzy drinks, crisps, processed meats, sweets and deep fried, fatty foods.
  • Some people benefit from excluding ‘nightshade’ vegetables (potato, tomato, aubergine, peppers). Tomatoes in particular can be inflammatory. Others feel better if they exclude all dairy products – milk doesn’t agree with me. No two people are the same and it certainly pays to experiment.
  • Note: Different foods and ingredients can be described as having a positive or negative Inflammation Factor. This is a way of judging which foods are more likely to cause inflammation and which are more likely to prevent it. Some foods vary in this respect according to how they’re prepared. For instance, garlic is very anti-inflammatory eaten raw but must be crushed to release the beneficial parts. However it’s much less beneficial after cooking.

Further information can be found on the   Inflammation Factor website, www.inflammationfactor.com.

You may also find  “Dr Weil’s  Anti-inflammatory Food Pyramid” of interest. http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyramid.html

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

 

 

 

Why changing your diet could help control Birdshot Uveitis

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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

 

 

 

 

Microneedles improve drug delivery

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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

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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

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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

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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

Fight for OUR Sight – support the Carrots Nightwalk

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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.