Category Archives: Useful tips

US edition of the Birdshot Survival Guide

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The US edition of the Birdshot Survival Guide, edited by Patricia Clarke and Leanne Oswald

BUS is delighted to publish online, a revised edition of the Birdshot Survival Guide, especially for Birdshotters who live in the US. BUS members Patricia Clarke and Leanne Oswald collaborated on this and provide us with the revised edition.

At the moment there are not plans to print physical copies but we suggest that you may like to print off copies of the last few pages of the guide (page 34 – 39), to keep with your notes about your eye clinic appointments so that you can note down useful number that you can have readily to hand.

Birdshot Day 2018, SESSION 4

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Living with sight loss is something that every birdshotter worries about. For most of us, our loss of vision is quite gradual. Without treatment, we are liable to become severely sight impaired eventually. With better treatments becoming available, this is fortunately less likely to happen.

Julian Jackson – “Living with Sight loss”

Here Julian Jackson tells us what it is like to live with sight loss. He suffered from retinitis pigmentosa and in his 40’s lost his sight completely. http://visionbridge.org.uk

Below, Preeti Singla, a low vision specialists, tells about how to maximise our vision through the use of apps and equipment that do not have to cost a fortune. A copy of her apps and gadgets handout, is found here: https://birdshot.org.uk/wp-content/uploads/Maximising-your-visual-potential-Handout-2.pdf

Preeti Singla – “Maximising your visual potential

More information about Julian Jackson

After a long career in management consultancy and organising events in emerging markets, followed by five years as Director of Development and then Senior Adviser to a leading eye research charity, Julian launched the social enterprise ‘VisionBridge’ in June 2016, supported by a growing nationwide group of academic researchers, clinician scientists, clinicians and patient advocates. He is building on the work he started in 2014 to promote eye health, increase the awareness and understanding of sight loss and introduce the extraordinary world of eye research to the public, eye health professionals, patients and the wider visually-impaired community across the UK.

Julian lost his sight in 2010 to a retinal inherited disease and therefore has a personal as well as a professional interest in the daily battles being waged in hospitals and universities across the UK to prevent sight loss, treat eye disease, restore sight and improve the quality of life for patients through enhanced rehabilitation.

More information about Preeti Singla MSc MCOptom DipTp (IP) Prof Cert Glauc

Preeti is a Specialist Optometrist with over 15 years’ experience in profession, spanning NHS hospitals, community optometry and as the clinical supervisor for the undergraduate optometry degree at City University, London. She started her career in primary care (‘high street’ or community practice) but quickly realised that her passion lay in secondary healthcare and the management of eye conditions, rather than in screening and the commercial side of optometry. She worked for a number of years across both sectors and then in 2010 made the switch to working in the hospital service full-time. She has worked for The Royal London Hospital Whitechapel, Moorfields Eye Hospital and most recently for Buckinghamshire Healthcare Trust, covering Stoke Mandeville, High Wycombe and Amersham Hospitals. Her work in the hospital sector has covered a broad range of experience in both core optometry clinics and also in an extended role, working alongside ophthalmologists in paediatrics, glaucoma and retina specialities. She has a keen interest in low vision rehabilitation and too on the role of Low Vision Lead at the Royal London, working closely with low vision aid suppliers. Preeti has also written a number of articles the most recent being a series of three articles on low vision.

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Flu vaccination – stay well this winter

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We were reminded by an email that arrived in the BUS in-box this week that it is once again time in the UK to get your flu jab:

‘You may have seen that the latest NHS Stay Well This Winter campaign has launched which encourages vulnerable people including those with long-term health conditions, anyone aged over 65 and their carers to get the free flu jab.

As you may be aware, flu is a highly infectious disease and can lead to serious complications if you have a long-term health condition like: COPD; bronchitis, emphysema; diabetes; heart, kidney or liver disease or have suffered a stroke. We are particularly trying to reach people with these conditions as flu on top of health conditions like these can easily develop into something very serious and could land you in hospital. People with these and other long-term health conditions are eligible for a free flu jab through their GP or pharmacist’.

The campaign leads with the message: ’If you are eligible for the flu vaccine get it now – it’s free because you need it. Contact your GP or pharmacist to the get the flu jab.’

As well as the categories of ‘long-term health conditions, anyone aged over 65 and their carers,’ if you are on immunosuppressant treatment, including oral steroids, at any age, this places you in a priority group for the free flu jab.

In UK and many other countries, the injectable flu vaccine is an ‘inactivated’ vaccine, so it can be safely given to people taking immunosuppressants. However, in UK, there is also a ‘live’ flu vaccine which is given to children via the nose, and this should not be given to anyone who is immunosuppressed.

Further information can be found on the campaign website at nhs.uk/staywell.

A BSL version of the leaflet has also been produced which can be viewed on YouTube at: SWTWBSLleaflet

Interactions – a new BUS Q & A page

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We are frequently asked about possible medicines interactions, particularly between prescribed immunosuppressants and complementary medicines such as dietary supplements or herbal remedies. The truth is that there is often no easy answer to many medicines interactions questions.

So, we decided to develop a new Q & A page to help you understand the subject of medicines interactions. We hope you will it find helpful, thought-provoking and enlightening.

The Q & As explain some of the complexities of medicines interactions. We hope that they will guide you in your searches and checking processes for the interactions information you need before you consider buying other medicines or supplements to add to the medication you are already taking.
Follow this link to browse the Q and A’s.

The Q & A content was created by one of our members. It has been reviewed by healthcare professionals and by members of the BUS standing advisory committee.

BUS would like to thank all those involved in preparing and checking this information.

April 2015

RNIB Technology Support Services

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Recently a volunteer from RNIB wrote to BUS telling us about a services that they provide for blind and partially-sighted people.  It is called their Technology Support Service and they are asking us to promote it to our members.

The Technology Support Service aims to help blind and partially-sighted people to remain or become independent.  So if your vision has been badly affected by your Birdshot at the moment, or you know someone else who could use this help, you might like to get in touch with RNIB to find out more.  Note you do not have to be registered as partially sighted, but you do need to be based in the UK!

RNIB specialist volunteers – known collectively as the Technology Support Squad – are available to help with all kinds of technology-related tasks such as installing DVD players, connecting PC’s/Laptops, helping individuals access audio libraries, using  DAISY talking book player and many other technical type problems which you might find difficult on your own.

They also have a network of volunteers who are available to help people by visiting them in their homes.

If you think you know of someone who could benefit from the use of this service, please ask them to get in touch with the Technology Support Squad on; 0303 123 9999, email; helpline@rnib.org.uk or find us online; rnib.org.uk/techsupport.

If you do decide to try it out, please do let us know how you get on.  It is always interesting to get feedback about services like this.

Annie

 

Updated Interaction Advice for Simvastatin

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The Medicines and Healthcare products Regulatory Agency (MHRA) has written to healthcare professionals with updated advice about drug interactions between medications containing simvastatin (Zocor, Inegy) and other drugs that may be prescribed at the same time.

Simvastatin is a drug taken to reduce cholesterol and is something that Birdshotters may be taking to counteract a side effect of their medication for Birdshot.

It states that:- “Simvastatin can cause muscle weakness (myopathy) or muscle breakdown leading to kidney damage (rhabdomyolysis) and it was already known that at high doses and if certain other medicines are taken at the same time this risk is increased.”

Of particular note are two drugs which a few our of our members also take are in the list of medicines not be taken at the same time as simvastatin.

They are the immunosuppressant known as Cyclosporine/ciclosporin (Neoral, Sandimmune)

and Amlodine which is  common blood pressure medication.    In this instance it recommends that simvastatin should not be used at a dose of more than 20mg daily

As with cyclosporine it is also important to note that grapefruit juice should be avoided by anyone taking simvastatin.

What does this mean to Birdshotters?

If any of our members are worried about this you  should talk to your doctor or health care professional  about it, rather than just stop taking the medication, because the benefits of treatment with simvastatin continue to outweigh the risks for most people who are on them.

To read the whole alert follow the link below.

http://uk.mediguard.org/alerts/alert/2164.html

What your eyes reveal about your health

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The Wall Street Journal published a really interesting article in August on how your eyes can reveal clues to your general health.

An ophthalmologist, Dr David Ingvoldstad from Midwest Eye Care in Omaha, Nebraska regularly alerts his patients to possible autoimmune diseases they may be at risk from or have, such as rheumatoid arthritis and lupus.  He does this through their vision changes, or through the state of health of their eyes.  He has even been able to monitor the progression of a patient’s diabetes through their eyes, and once alerted a patient to the fact that they had a brain tumour, based on the changes in their vision.

He is able to do this because the body’s systems are interconnected, and changes in the eye can reflect changes in the vascular, nervous and immune system.

The article suggests that, with regular monitoring, ophthalmologists can be the first to spot certain medical conditions and can ensure that patients receive early care and treatment.

We, with Birdshot, are regularly monitored!  One benefit of having Birdshot.

Read the full article at:

http://online.wsj.com/article/SB10000872396390444184704577587211317837868.html

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