Birdshot Day on You Tube

A short video of the Birdshot Day of 3 March 2012 has been posted on You Tube.  It gives an overview of the Day, and is only 4 minutes long, so makes easy viewing!  It is in HD, so really nice quality.  Take a look everybody, and if you like it, please like it!  And see if you can spot yourself, if you were there on the Day.

It can be found on Youtube by following the link below.

http://www.youtube.com/watch?v=MoLMSewDNmo

We are busy finalising the long DVD which will show the whole day, and this should be available in a couple of weeks.  We will let you know when it is ready.

Have fun viewing.

 

Government Rare Disease Plan – Consultation

Birdshot is a rare disease.  Because of this, it can sometimes be difficult to get the right diagnosis and treatment.

The Government will be implementing a Rare Disease Plan by 2013.  This plan SHOULD help all of us, with rare diseases get better services.  But will it?  The plan is now being consulted on, and the closing date for comments is 25th May.

This is our opportunity to give our opinions, and make sure the rare disease plan meets our needs.

You will remember that BUS has worked with Rare Disease UK  (the national alliance for people with rare diseases and all who support them) to help advise the government on what people with rare diseases need.  Some of our recommendations have been incorporated, but we are worried that this plan will not fully meet the needs of those of us with Birdshot and other rare diseases.

Individual patients can respond to the consultation, as can patient organisations and healthcare professionals.  If you are an individual patient, or a healthcare professional, please take the time to have a look at the rare disease plan, and see if you think it will work for you.  The plan can be found at:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_132880

If you want to understand why the proposed rare disease plan might not meet needs, Rare Disease UK have produced a very good presentation that you can listen to at:

http://www.anymeeting.com/RDWebinarEngland/EA56D880804C

If you have any concerns at all, following listening to the above presentation, please do submit your comments to the Department of Health.  If you need help in designing your comments, Rare Disease UK has provided help – just click on the link below.

advice document

Alternatively, you can submit your comments to Rea at info@birdshot.org.uk and she will collate and present them

Many thanks everybody – if we work together, we might be able to get an NHS system that meets our needs!

The role of Indocyanine Green Angiography in Birdshot Diagnosis

Carl Herbort and Marina Papadia from the Centre for Ophthalmic Specialised Care in Lausanne, Switzerland analysed the cases of Birdshot seen at the centre between 1995 and 2010.  These cases included people who had no specific diagnosis on referral, because they did not have the typical ‘birdshot lesions’, although they were HLA A29 positive.  These patients did have vitritis and retinal vasculitis (this is as a result of the inflammation, and to us Birdshotters presents as the floaters and ‘mist’ and other symptoms we have).

When these people were given ICG (Indocyanine Green Angiography) they were shown to have ‘bilateral evenly distributed choroidal hypofluorescent dark dots representing choroidal granulomas’.

The conclusion of this retrospective analysis is that ICG is an essential tool to diagnose early Birdshot.

This is a really interesting piece of research for me – I first presented without the typical Birdshot spots/lesions – but I was lucky to come across an amazing ophthalmologist who diagnosed me in record time (and did give me an ICG!) and got me onto appropriate medication in record time.  I still have very few of those characteristic spots/lesions, 7 years into the disease!

The full article can be accessed at:  http://www.ncbi.nlm.nih.gov/pubmed/22496001

Rea

How are patients involved in licensing new medications?

On 13 February 2012, Genetic Alliance UK published a report of a Citizens Jury’s findings.  The Citizens Jury was tasked with deciding on the balance of risk versus benefit of new medications for serious and rare diseases.  We are hoping that this report will influence the regulators for those of us with rare, serious diseases, who struggle to find appropriate medications.  The regulators often take a very cautious view about the risks of medications – however, many of us with serious conditions are prepared to take risks (as long as we are fully informed) if the benefits are that we can continue to live a good enough life.

This is something we, with Birdshot, already face.  We know that our medication regimes can be toxic, but we make the fully informed decision to take medication in order to preserve our sight.  That is our choice.

Rea was a member of the Citizens Jury – here she is with her fellow jurors.

More information on the Citizens Jury can be found at: http://www.geneticalliance.org.uk/latest-news.htm

Here are the findings of the Citizens Jury:

1. Regulators should include psychosocial factors in their decision making – Jurors would like to see regulators broadening the range of issues which they consider when deciding whether to approve a new medicine. Jurors have generated a list of 25 psychosocial factors that are important to them, to be included in the assessment of risks and benefits of new medicines.

2. Regulators should be more permissive for those treatments for people with rare and/or serious conditions-Because of their often unique circumstances, patients with rare and/or serious conditions may well be willing to take greater risks than the system currently allows. They should be given that choice.

3.  Patients should be more involved in all stages of the process, from setting the research agenda, to post-marketing authorisation decisions – Patients’ experiences and preferences should be included at all stages. Patient representatives (such as patient group members) should be supported to be joint decision makers, alongside clinical experts, throughout the process.

4. Patients should be better supported to make their own decisions – Decision-making about new medicines is challenging, but possible for most patients provided they are given adequate information and support? (or something like that). Jurors generated a list of questions to help guide patients when deciding on their own treatment options.

More on Vitamin D

Those of you who attended the Birdshot Day on 3 March will remember our very inspiring speaker, Professor Glen Jeffery and his research into Vitamin D.

Coincidentally, John Hall, one of our Directors, was diving in Palau last week  and found a very extensive article on Vitamin D.  (for those of you who, like me, don’t know where Palau is – I looked it up – it is an island off the Philippines).

The full article can be found at

http://www.sciencenews.org/view/feature/id/332009/title/The_power_of_D_

The article reviews all the research and all the arguments both for and against Vitamin D and looks at why it might be a useful remedy.

Please remember the warnings though – those of us who are on steroids and immunosuppressants are already putting some strain on our liver/kidneys, so please ALWAYS check with your consultant if you want to add supplements into your regime, as they can and do interact with your medication.

 

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 info@birdshot.org.uk.  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 info@Birdshot.org.uk

Lorraine

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

http://www.ncbi.nlm.nih.gov/pubmed/22470169?dopt=Citation

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:  http://www.ncbi.nlm.nih.gov/pubmed/22465791

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

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 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!!!