How are patients involved in licensing new medications?

Posted on April 13, 2012 by Reanna7

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.

The full report can be found at

http://www.geneticalliance.org.uk/docs/citizens-jury-report.pdf

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

Posted on April 12, 2012 by Reanna7

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

Posted on April 12, 2012 by Reanna7

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

Posted on April 12, 2012 by Reanna7

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

Posted on April 11, 2012 by Reanna7

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

Posted on April 11, 2012 by Reanna7

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

Posted on April 11, 2012 by Reanna7

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

Posted on March 28, 2012 by Annie

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

Posted on March 28, 2012 by Annie

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

Posted on March 26, 2012 by Annie

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