Your Ideas Please for Fundraising

Dear Birdshotters and friends

It is now just over a month since the Birdshot Day and time to start thinking about our plan to raise funds to make a difference in all our lives.  Not just for a biobank, but for research projects mentioned on the Day, that are looking at less toxic methods to control our Birdshot.  As you all know we are a very special group and belong to quite an exclusive ‘club’!  This is why it is so important that we all put our heads together and come up with ideas and plans to raise as much money as possible for our wonderful group of Birdshotters.

This is something that many of you are already thinking about and have come up with unique ways of doing. We have bake sales coming up, used book sales and of course the Carrot Walk in September. Our team of walkers is growing all the time, and I suspect we will have an amazing group ready to take London by storm!!  If you want to join us and need any help with registration or setting up your just giving page then please get in touch at  Sue Wheeler has very kindly offered to help with any difficulties.  It promises to be a fun event and despite the fact that we will be walking for 6 miles (our younger walkers) or 15 miles (the rest of us) through London at night time, I think we will have a laugh.  If anyone wants to walk with a full trolley of refreshments, that would be extremely welcome too!  We will be organising ‘training’ walks over the coming months which will be a great excuse for us all to get together and as most of us like to chat, its a good excuse to do that too!

If any of you have creative ways in which you can help raise further funds, I would love to hear about them. We can help you with BUS posters and leaflets to let people know who we are and what we are doing.

I would love to hear your thoughts and ideas about how we can move things forward.  Contact me at


Bisphosphonates (Alendronic Acid) and possible side effects

We have written quite a few articles about bisphosphonates (we, with Birdshot are usually prescribed bisphosphonates, such as alendronic acid, when we are on steroids).  Bisphosphonates help to protect us against the damage to our bones that steroids may produce.

A recent study from British Columbia looked retrospectively at people who were first-time users of oral bisphosphonates and who had visited an ophthalmologist between 2000 and 2007.  This group was compared to people who did not use oral bisphosphonates.

The study concluded that the incidence of uveitis in first-time users of oral bisphosphonates was slightly higher than for non-users and the incidence of scleritis was quite a lot higher in first-time bisphosphonates users.

The findings were that people using oral bisphosphonates for the first time may be at higher risk of scleritis and uveitis than non-bisphosphonate users.

This is not really new information – we have known this for some time. It is important always to keep a check on our medications and side effects, and to have strong relationships with our consultants so we can fully understand the risks versus the benefits of each medication.

The full article can be found at

Lutein: The role it plays in eye health

Researchers from the University Eye Clinic in Maastricht, The Netherlands have looked at the role of Lutein in eye health.

Lutein is one of the carotenoids – it is a yellow and orange pigment found in many fruits and vegetables such as carrots, mangoes, corn, sweet potatoes, tomatoes and dark leafy greens such as kale and bok choy.  Interestingly, lutein tends to make up a minor part of our diets here in the UK.

It has been suggested for some time that Lutein protects the eyes against macular degeneration and cataracts.

Lutein, together with another anti-oxidant, zeaxanthin, forms the macular pigment (and thus protects us from glare and bright lights).

The research showed that animals that did not have an intake of lutein displayed early signs of degeneration of the retina.

Of equal interest to us Birdshotters is the recent findings that lutein can affect immune responses and reduce inflammation.

We are not suggesting that every Birdshotter rushes out to buy lutein – remember that every supplement can affect our body negatively as well as positively, and can inter-act with our medication regimes – so it is always best to check with your consultant.  However, this piece of research looks very promising, and is a really good reminder that we need a balanced, healthy diet.

The full article can be found at:

Micro organisms And Autoimmune Diseases

Scientists from Charite – Universitatsmedizin Berlin and the Institute for Research in Biomedicine in Switzerland have looked at the micro organisms we all carry around and found that, whilst some microorganisms can activate immune cells (leading to certain auto-immune diseases), other microorganisms can help develop an anti-inflammatory response.

They found that one of our body’s own immune system hormones called interleukin 1b works like a ‘switch’ – if it is present, it trains immune cells to become destructive (a dis-regulated immune system) whereas, if it is absent the immune cell develops into an anti-inflammatory counterpart.  It is the microorganism balance we carry in our bodies that determines whether interleukin 1b is produced or not.

This is really interesting – to my mind, it begins to explain why pro biotics have become so popular, and why something like food poisoning (which changes the balance of your micro organisms) might be a ‘trigger’ for autoimmune diseases.

The full article can be found in ScienceDaily at:

Raise money for BUS when you shop

Do you shop on-line?  If so, there is a very simple way of raising money for BUS without spending any of your own money.

Here is how it works: log on to Easy Fundraising at and click on the tab that says ‘find a cause’.  Type Birdshot Uveitis Society into the box that displays, and click on the button that says ‘support’ next to Birdshot Uveitis Society.

Once you have done that, just remember to log into easy fundraising every time you want to shop on-line.  You will find all your favourite retailers listed (including Amazon, John Lewis, Argos, etc).  click on the retailer you want to shop from and a new window for that retailer will open up.  Just shop in the normal way, and an automatic donation will be made to BUS!  Hooray!!!





We Promised to Re-Issue the Article on Saffron – here it is:

Saffron Improves Vision In AMD Patients

We read about this in the latest Vision Newsletter March 2010. It is interesting to see that some serious research is being done into the affect of Saffron on AMD.  A couple of our members have suggested that Saffron appears to have helped them but we had no idea that scientific research was being done.

A clinical trial has found that saffron, the famous Indian spice, can improve vision in patients with AMD, according to new reports. The trials were conducted by Silvia Bisti of the University of Sydney. The trial participants showed significant vision improvements after taking a saffron pill for three months, she said. “Measurements using objective eye sight tests showed patient’s vision improved after taking the saffron pill. When they were tested with traditional eye charts, a number of patients could read one or two lines smaller than before, while others reported they could read newspapers and books again.” The trial was double blind and randomly controlled, involving 25 subjects over six months. Half the group were given a saffron pill for the first three months followed by a placebo, while the other half were given the pills in the reverse order. “All patients experienced improvements in their vision while taking the saffron pill,” Dr Bisti said. “But when they stopped taking the pill the effect quickly disappeared”

Thank You, Thank You, Thank You

A Huge Thank You to Everyone who attended the Birdshot Day for patients and professionals


We so appreciated the fact that you spent your precious time not only attending the Birdshot Day, but contributing and making it such a great learning opportunity for BUS and Moorfields and all the healthcare professionals and people with Birdshot who attended.

It was really exciting for us to be able to meet so many people with Birdshot and so many professionals who cared about Birdshot and to watch the buzz generated during the networking and question opportunities. Given that this was our first attempt, we really do want to learn from it and make it even better. All the feed-back you have already given us will be analysed carefully so that we can learn from it.

However, If you have any reflections or feelings or comments or take-home messages about the day, please let us know by posting them here, or emailing us – short comments, long essays, emotional reflections, – whatever you choose to write will be gratefully received by us.

The three of us – (Rea, Annie, Narciss) had a conversation at the end of the day, and, apart from being exhausted, we were so exhilarated by being able to begin to dream that we might form a ‘Birdshot Community’ that can bring about real change in people’s lives. We were also slightly tearful – some of the tears were because it is still an emotional experience for Rea and Annie to meet others with Birdshot and exchange stories; some of the tears were to do with the genuine emotion and strength shown by both people with Birdshot and healthcare professionals.

Please, please do let us know your feelings, comments, reflections, emotions, take home messages or anything that has come to your mind since attending the Day.

Thank you all for attending and making this such a special occasion.

Rea, Annie and Narciss