Research
Clinical Trials
Recently Birdshot Uveitis Society registered on the NHS Choices site (this link takes you to the section about Uveitis) and I discovered a link to a list of on-going Clinical Trials. I was quite excited at first until I realised how little appeared to be going on in the UK.
We are often asked about clinical trials that are going on in the UK and also in the rest of the world. Sadly there are no clinical trials that relate specifically to birdshot, and hardly any current ones in the UK for uveitis.
Uveitis Information Group website has a whole section on clinical trials that you might like to read before even considering one. There is also a booklet published by the UK Clinical Research Collaboration which may be of interest to you.
Unintended effects of Statins
Rea came across this piece of research, published in the BMJ last week, which highlights increased risk of liver/kidney damage and myopathy and cataracts from taking statins. The research highlights some of the possible side effects of taking higher doses of statins.
As a result of this, Doctors are being urged to choose the lowest possible dose when they prescribe cholesterol lowering statins.
If you currently take statins you may wish to review this with your GP and Ophthalmologist, discuss the benefits against the risks to find out if drug you are prescribed should be changed.
The link below takes you to the published paper.
Reasonable adjustment for VI at work?
Following on from Adrian’s article entitled “Coming out at Work” about the Disability at Work Act, we came across this piece of research being done by David Griffiths. He is looking for visually impaired people who are prepared to be interviewed over the telephone and are interested in helping out with his research on this topic. If you are, he can be emailed at:- d.griffith@btinternet.com. › Continue reading
Saffron
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. › Continue reading
10 Years of EU Orphan Drug Regulation
It is 10 years since orphan drug regulation was implemented in Europe and the European Medicines Agency (EMA) is marking the anniversary with various conferences and workshops during April and May. › Continue reading
Green Tea
New Evidence That Green Tea May Help Fight Glaucoma and Other Eye Diseases
ScienceDaily (Feb. 20, 2010) — Scientists have confirmed that the healthful substances found in green tea — renowned for their powerful antioxidant and disease-fighting properties — do penetrate into tissues of the eye. Their new report, the first documenting how the lens, retina, and other eye tissues absorb these substances, raises the possibility that green tea may protect against glaucoma and other common eye diseases.
The whole article can be found by following this link.
http://www.sciencedaily.com/releases/2010/02/100218125520.htm
The Importance of Patients in Research of Rare Diseases
It seems very apt, when we have just finalised the date for our first Birdshot Patient Day for Saturday 11th September 2010, to come across some research by EURORDIS (the EURopean Organisation for Rare DISeases). EURORDIS is the voice of ‘patients with rare diseases across Europe’.
The survey has found that rare disease patient organisations (such as BUS, the Birdshot Chorioretinopathy Uveitis Society) play important roles as catalysts for research on their respective diseases. They can also be valuable partners in identifying the gaps and supporting early research in areas not covered by the public or private sectors.
Alendronic Acid – Take a break!
Take a break to prevent a break!
“Don’t use it for more than five years!”
We recently came across this article about the long term effects of Alendronic acid and thought we should bring it to your attention. The long and the short of it is that it is not a good idea to use the drug for periods of longer than 5 years, as it has the effect of making your bones go brittle and actually causing breaks.
Naturopath, Jacob Schor, ND, FABNO, writes:
“The drugs that have been used with apparent success to treat osteoporosis may now have a problem. Alendronate may weaken bone and lead to increased fracture risk. › Continue reading
Bevacizumab/Avastin
http://www.ajo.com/article/S0002-9394(09)00410-3/abstract
This study looked at the the effect of intravitreal bevacizumab (Avastin; Genentech Inc, South San Francisco, California, USA) on visual acuity and macular thickness in patients with inflammatory choroidal neovascularization (CNV) or cystoid macular edema (CME).
The study concluded that Bevacizumab appears to stabilize the eyes with inflammatory choroid neovascularisation or cystoid macula edema.
This type of treatment is only available in the UK on the NHS for people who have wet AMD. If it does help people with choroidal neovascularization (CNV) or cystoid macular edema (CME), (possible complications of birdshot chorioretinoapthy), as this research would indicate, we need to take action and lobby for it as a possible treatment.
A study of Irish patients with birdshot
This paper was given at the Prague Ocular Inflammation Society Congress in June 2009 by Dara Kilmartin Consultatant Ophthalmologists at Royal Victoria Hospital Dublin. It would seem to suggest that getting an early diagnosis is important.
Disease severity and outcomes with immunomodulation in Irish Patients with Birdshot Chorioretinoapthy. D.J. Kilmartin, A.C. Hogan, S. Jungkim, P. Kenna, Dept of Ophthalmology and Research Foundation, Royal Victoria Eye & Ear Hospital, Dublin, Ireland › Continue reading