Yearly Archives: 2012

Micro organisms And Autoimmune Diseases

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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:  http://www.sciencedaily.com/releases/2012/04/120405075223.htm

Raise money for BUS when you shop

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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 www.easyfundraising.org.uk 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!!!

 

 

 

Food Poisoning and autoimmune diseases

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Many research studies have looked at the link between food poisoning and the onset of diseases, either shortly after the food poisoning, or later in life.

Last week, the Daily Mail published a short article by Fiona MacRae, the Science Correspondent, reminding us of this link. The article states that Salmonella, E Coli and other types of food poisoning may have lifelong consequence.  This includes the possibility of autoimmune diseases. The full article can be accessed at:

http://www.dailymail.co.uk/health/article-2117948/Food-poisoning-lifelong-consequences-bugs-linked-host-illnesses.html

This article got us thinking. We know of at least two people who had very very severe food poisoning shortly before the first Birdshot symptoms occurred (one of these people is Rea).

Can anyone else identify this as a trigger to Birdshot? Or can you think of any other possible trigger? It would be really helpful to start collating this information, so we can begin to identify whether there are common ‘triggers’ or a whole range of triggers.

Humberside Local Birdshotter Group and Fundraising

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Sue Bridge, a BUS member and a Birdshotter, is setting up a local group for people with Birdshot in the Humberside/Lincolnshire area. She had already set a date for the first meeting, but this had to be cancelled due to bad weather. She is now busy re-organising this first meeting.

Last weekend she and another Birdshotter set up a BUS stall at a local craft fair to advertise Birdshot and to raise money by selling hand made cards and crafts.

Below is a photograph of their stall – it really looks great. This is wonderful publicity for us – any opportunity we can get to help raise the profile of this rare disease helps us along the path of creating more interest and finding better treatments or a cure.

Many thanks Sue for your hard work. Any Birdshotters in the Lincolnshire, Humberside, Yorkshire wanting to attend the local group can email Sue@birdshot.org.uk She is really keen to hear from you.

 

Sue Bridge sells cards at local craft fair

Sue Bridge sells her hand-made cards at a local craft fair for BUS

 

 

 

Birdshot Day 2012 Feedback

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Team Birdshot

Above the team of helpers: member of BUS and family and friends, medical students, staff from Moorfields Eye Hospital and the NIHR BRC for Ophthalmology.  Thank you all of you.  We wouldn’t have been successful without all your help.

Below views of the audience (at times the auditorium was completely full) with nearly 200 patients and professional attending.

 

Follow the  links below if you want to see small galleries of  pictures from the day which were all taken by Meike Walcha, NIHR BRC for Ophthalmology at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology.

 

Birdshot Day 2012

Setting up and Registration

Speakers and people involved in the day

Mingling and mixing

Poster Evaluation

Exhibitors on the Day

Art Workshop

Raffle

Birdshot shock

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We wanted to share this very moving poem as we are sure it will resonate with most members who will know exactly the experience Margaret is talking about. Margaret was the opening BUS speaker at the 2012 Birdshot Day.    Thank you so much.

Birdshock

In that dark room,

chin cupped,

brow banded,

eyes dilated,

unmoving, dumb

before the bright slitted light.

‘Look up’

‘Look down’

‘To the right’

‘To the left’.

In that blurred

pink-tinged room –

silence.

‘Birdshot’.

Echoing gunshot.

Exploding fear.

Bird wings beat

on ribcage.

Mouth

birdcage-dry.

‘Birdshot’.

In that dark room

a life shot down.

Outside,

in the smeared world,

by the bus stop,

a bird sings.

Margaret Gilmour  February 2012

 

Blind people to lose millions

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The Government’s plans to replace Disability Living Allowance (DLA) with Personal Independence Payment (PIP) will remove tens of millions of pounds from blind and partially sighted people.

The criteria for the new benefit fail to recognise that sight loss is a serious disability and that you face extensive extra costs if you can’t see.

Act now to challenge this benefits shake-up that will hit blind and partially sighted people particularly hard.

RNIB’s website carries useful information about the government benefits shake-up and what you need to do to lobby against it by writing to your MPs.  To find out more visit the link below.

http://www.rnib.org.uk/getinvolved/campaign/yourmoney/personalindependence/Pages/PIP_act.aspx

 

‘Clusters’ of Birdshotters? Your help please

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With more Birdshotters registering on BUS, we are beginning to develop a better picture of Birdshot.  One of the interesting questions that keeps arising is whether certain geographical areas have more people with Birdshot.

At our Birdshot Day on 3 March, we were quite amazed to find two people with Birdshot from a very small town.  They were equally amazed!  We have also noticed that there are several members who live within a few miles of each other in an urban area and another ‘cluster’ in a northern city – again quite disproportionate to the probable total numbers of people with Birdshot in the UK.

We would really like to build up a more accurate picture of the geographical spread and we can only do this with your help.

We would love to have your postcode (if you have not already supplied us with it) so we can map where you live, and produce a more accurate map of the geographical location of us Birdshotters.  Your postcode will be kept totally confidential – it will only be used to help us identify your geographical location on a map.  Once we have mapped the UK, we will attempt to map other countries too, and begin to build up an international picture.

Please send your postcode to us at info@birdshot.org.uk

We thought you would be interested in seeing the google analytics map of the UK of visitors to the BUS website since September 2010. Of course, not all visits are from Birdshotters, but it certainly identifies areas where the strongest interest is.

 

Thank you in advance to everybody who sends us their postcode, so we can produce a realistic map of the UK to show geographical locations of people with Birdshot.  This will help to make sure research and services are targeted to meet our needs.

 

The Three Tenners

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For those of you who came to the Birdshot Day on Saturday, 3 March, you will have heard Mike Brace with his inspirational opening speech to the Day.

Mike is the BUS professional Advisor. He has long experience in running charities, and he is currently the Chief Executive of VISION 2020 UK which is an umbrella organisation that facilitates greater collaboration and co-operation between organisations that work with people who have eye and vision problems. BUS is a member of VISION 2020 UK.

Mike is helping us to ‘grow’ BUS and is our main speaker for any events we hold. He has been blind from a young age, but that has not stopped him becoming a medal winning Paralympian and he was awarded a CBE for services to sport. He is working on the 2012 Olympics and Paralympics.

To celebrate his impending retirement, Mike and two other Chief Executives of charities working with people who have eye problems have decided to take on an extreme challenge to raise money for sight loss causes.

The three of them are calling themselves ‘The Three Tenners’ (and he promises not to sing!). Mike has already competed in a game called Boccia and is about to compete in the Goal Ball challenge this Friday 9 March. He then goes on to a rowing challenge, sailing (he says he hopes to manage this without a seeing guide, so stay out of his way if you see him on the water!), tandem riding, judo, shooting (ohoh – another place to stay away from!), track and field athletics and ‘sound’ tennis.

Mike is truly inspirational and has been such enormous help to us.

If you want to donate to his magnificent fundraising event, go to his Be My Charity page at

http://www.bmycharity.com/3tenners

 

Sirolimus eye injections given orphan drug status

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Sirolimus has been given orphan drug status, which suggests that the studies carried out at various institutions have shown positive results. It is still being trialled as  part of a phase 3 study (see attached link.)

This drug given as an invitreal injection, was discussed at the Birdshot Day 2012. We were told that the risk of developing glaucoma and cataracts as an adverse effect of sirolimus may be lower than the risk associated with steroid treatment.

We await more information, but it is possible sirolimus might be a useful alternative treatment for people with Birdshot, especially for those who fail to achieve remission on the Cellcept (mycophenolate mofetil)/ cyclosporin formula.