Moorfields Star awards Birdshot winner

About 220 staff and their friends and family members attended the annual Moorfields’ Stars ceremony on Wednesday 2 March. The event, which again received overwhelmingly positive feedback from those involved, was designed to recognise and reward staff for personal and professional achievements.

group-stars

Special awards were presented in recognition of academic success and long service as well as to the winners of the employee of the month scheme during 2010. Awards were also given to the winners of four special categories with the Birdshot Uveitis Patient Day Team receiving the Special Trustees’ team award for innovation in patient care, research or education.

We are absolutely delighted with this news particularly as we received a £1000 donation from the Special Trustees to go towards our next event.  This is great news!

At the risk of repetition:  “Long live Team birdshot!”

Adalimumab Study

We recently heard about a  study that is currently recruiting in Aberdeen and Bristol Eye hospitals.   We know of at least one Birdshot patient who has been recruited on this study in the UK and probably there are others.  This link takes you to details about the clinical trial.

The objective  of this study is to test the  Efficacy and Safety of the Human Anti-TNF Monoclonal Antibody Adalimumab in Subjects With Inactive Non-infectious Intermediate, Posterior, or Pan-uveitis.

Adalimumab (also called Humira) is a type of drug known as anti-TNF (anti-tumour necrosis factor). In people with rheumatoid arthritis and some other inflammatory diseases a protein called TNF is overproduced in the body, causing inflammation and damage to bones, cartilage and tissue. Anti-TNF drugs block the action of TNF and so can reduce this inflammation.

Treatment with Adalimumab (Humira)  is self-injected normally every  two weeks. It may be used in combination with antimetabolites or calcineurin inhibitors. Its effect on uveitic activity can be swift, with benefit sometimes seen within days or weeks.  Although not currently licensed for uveitis this drug is already sometimes used in people  who have not responded to other  treatment.

Annie and Rea

More exciting news about inflammation

The discovery of an unexpected new mechanism behind the inflammation in rheumatoid arthritis was recently reported in the Journal of Clincial Investigation JAN 25, 2011

It’s all to do with GGTase-I which is found in all cells, but is particularly important for the function of so-called CAAX proteins in inflammatory cells. Apparently GGTase-I attaches a cholesterol-like fatty acid on the CAAX proteins.

Researchers previously believed that a fatty acid played an important role in activating the proteins and could contribute to the functioning of inflammatory cells. The research has shown that they have the opposite effect to what they expected.

The researchers believe that their discovery will contribute towards a greater understanding of the mechanisms involved in inflammatory processes, and help find appropriate medication. Birdshot is believed to be an inflammatory autoimmune disease, just like rheumatoid arthritis. We have always believed that the ‘cure’ for Birdshot is most likely to come from research into one of the other more well known and more common inflammatory auto-imune diseases. Now, with the launch of the Birdshot research network, we have extended the possibilities of finding that ‘cure’!

To read more about the research into GGT-ase1, follow the link at the start of this post.

Our very first study!

For those of you who attended the Birdshot Day in September 2010, you will remember that one of the aims was to set up a research network. We are very excited that research has now started at Moorfields Eye Hospital, and at least two of our members are already involved in one of these studies.

The study involves the trialling of a Motion Detection Perception test.

This test will assess your ability to see a moving target on a computer screen, so it is painless and quick and easy to do. Designed by the Institute of Ophthalmology and Moorfields Eye Hospital, it has already successfully been used for detecting early stage glaucoma and the researchers want to see if this test may be equally useful for people with Birdshot.

test_task

Real Ale reported he had a long and detailed interview with a researcher and was feeling more optimistic because of the care and trouble being taken. They even arranged for his cataract to be removed because it was going to aid their ability to monitor his birdshot. David reports having a similarly detailed interview with a different researcher.

Both were really impressed with the real interest shown by the researchers. We are really excited by the spin off benefits of these research projects – the raising of the profile of Birdshot, the interest being engendered in researchers and the more focussed care that patients receive as a result.

We are so grateful to ‘Team Birdshot’ – all the consultants, specialists, patients, family members and BUS who set up the Birdshot Day and enabled research to start. We will keep you informed as the research network progresses, and most importantly, we will be letting you know of any opportunities to become involved in research. The current research project is using patients already attending Moorfields, however future research projects will include a much wider range of patients from around the country.

White blood cell 'master switch' discovery

This is some breaking news which applies to inflammatory autoimmune diseases. The news is from scientists at Imperial College London, who helped to invent anti TNF medication (which some of us are on, for example Humira/Adalimumab). Imperial college scientists are hoping that, by finding the ‘switch’ for inflammation, they will be able to develop medication that can also turn off the inflammatory switch, so helping people like us with Birdshot Chorioretinopathy.  We thought members might like to read about something that sounds as if it might be a  promising  scientific development, which furthers the understanding of how inflammation can be controlled.

Annie and Rea

“Scientists in the UK have identified a protein that acts as a ‘master switch’ in certain white blood cells, determining whether they promote or inhibit inflammation. They believe these findings, presented in the journal Nature Immunology, could aid treatments for diseases, such as rheumatoid arthritis, which involve excessive inflammation. The study was funded in part by the MODEL-IN (‘Genomic determinants of inflammation: from physical measurements to system perturbation and mathematical’) project, which is backed with more than EUR 2.9 million under the EU’s Seventh Framework Programme (FP7).”

The full report from the EEC Research Centre  can be found at:

White blood cell ‘master switch’ discovery to aid rheumatoid arthritis treatments

EEC Research Information Centre – News 28th January 2011

New research into how we see

Our eyes see the world in previously unsuspected ways, say scientists

A type of nerve cell in the retina of the eye may have a more sophisticated role in vision than we thought, a finding that may lead to treatments for some kinds of blindness

To read more about this follow the link to the article in the The Guardian Newspaper 7th December 2010.  A scientific breath through in the understanding of how light sensitive proteins (melanopsins) relay visual information of the brain could lead to new treatments for blindness caused by degradation of rods and cones inside the eye.

http://www.guardian.co.uk/science/2010/dec/07/eyes-nerve-cell-vision-melanopsin?INTCMP=SRCH

Cellcept – goes generic

Instead of the usual purple white and black pack, that I pick up every month from my friendly local chemist I was greeted today by a white,orange and lurid green one.  Its called Myfenax, and apparently the ingredients are identical to Cellcept.  Jay, my pharmacist had told me when when I dropped off my prescription, that cellcept had gone generic and that the problem of obtaining it would now be over; but I hadn’t realised quite how quickly.  Myfenax is produced by Teva Pharma who are a dutch company, but inside the “mixed” pack I also had drugs from Dr Reddy’s Laboratories…… and  they are  an indian company based in Hyderabad, although they have a UK subsidiary marketing the drugs here. Continue reading

Saffron

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”

http://www.myvisiontest.com/news.php

Nurse led formal health review

Unfortuantely government cut-backs can sometimes mean that specialist uveitis nurses jobs are threatened.  These nurses can play a very important role in making sure we stay well while we are on this type of aggressive treatment.

We came across a paper on a “Nurse-led formal health review for immunosuppressed patients with uveitis” by NP Jones and M Pickford from Manchester Eye Hospital which we would whole heartedly agree with. We know from the feed-back we receive from patients with uveitis just how helpful and supportive these specialist nurses can be. Continue reading