Archive for June, 2010
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.
Uveitis the step ladder approach
by C. Stephen Foster M.D.
This article is included by the kind permission of Professor C Stephen Foster of the Ocular Immunology and Uveitis Foundation and Massachussettes Eye Research and Surgery Institution, Boston. It’s mainly about appropriate treatments for auto-immune forms of Uveitis in the USA, but a lot of what it says is relevant for people with Birdshot Chorioretinopathy in Britain.
“Uveitis of the eye is inflammation inside the eye, specifically affecting one or more of the three parts of the eye that make up the uvea: the iris (the colored part of the eye), the ciliary body (behind the iris, responsible for manufacturing the fluid inside the eye) and the choroid (the vascular lining tissue underneath the retina). › Continue reading
Brandy’s story
This is my experience with finding work and keeping it after vision loss; hopefully it will ease your mind at little. Brandy
Brandy is in the US so the links wont apply to the UK but the information is still relevant. If your in the US like a few of out members they may be useful to you. › Continue reading
The right lighting
For people with sight loss, good lighting and design reduces risks and increases safety, independence and quality of life. The Macular Disease Society produce a useful leaflet about this called Lighting Advice.
Lighting and design at home
Making the best use of lighting is important for everyone, but even more so if you have poor vision. Good lighting in the home is essential, and yet it is often overlooked. › Continue reading
InsuranceWith – specialist insurance
Rea attended the Genetic Alliance UK, (formerly GIG) conference last week. Among the people she met was Fiona Macrae, a former travel insurance broker.
Fiona suffered from cancer and found it impossible to obtain travel insurance that covered her. For many of us, we experience the same difficulty when mentioning that we have ‘Birdshot Chorioretinopathy’ and are taking immunosuppressants and steroids. Many travel insurance companies will only provide cover that excludes any incident related to our Birdshot (and our medication – in this case it may mean that if we fall sick on holiday, and it can be viewed as being caused by our immuno compromised state, we may not be covered). › Continue reading
Personalised Healthcare from E.G.A.N.
The link to a PDF file below is to an interesting booklet produced by European Genetic Alliances Network. It answers questions about what Personalised healthcare is.
“In one sense , personalised healthcare is nothing new. It is what doctors have aimed to provide for their patients through the excercis of their clinical judgement, backed up by specialist knowledge and the use of appropriate diagnostic procedures.
However, as research advances and we begin to understand more about he complexity of common diseaes, it is clear that a standard approach to the treatment of various diseases and disorders does not yield the results patients need. Increasingly therapies are now being selected based on an understanidng of the underlying genetic components of a condition and how these interact.”
The PDF link will tell you more.
Rea
Rare Diseases survey for familes and friends
We are publicising details of a survey that Rare Disease UK is conducting to help build a picture of rare disease in the UK from the perspective of patients, families and carers › Continue reading
I’m new to BUS
Hello all
I’m new to this forum and don’t have Birdshot, rather I have Still’s – aka juvenile rheumatoid arthritis + uveitis. But I am very relieved to find this forum, and will post more elsewhere in more detail if anyone is interested, as I am happy to share my experience with long-term use of oral prednisolone. › Continue reading
Filters and Tints to stop glare
Optima Low vision Services www.optimalowvision.co.uk
BUS has linked up with Optima, an organisation that produces low vision aids and equipment. We think they may provide some useful equipment for people with Birdshot. › Continue reading
Your chance to hear Dr C Stephen Foster
Back in March the world renowned uveitis expert, Dr C Stephen Foster M.D from the Ocular Immunology and Uveitis Foundation, MERSI, Boston http://www.mersi.us gave a lecture at Gresham College, London, on Inflammatory Eye Disease. It was part of the series that Professor William Ayliffe is giving about the Eye, Vision and Perception.
For those who were unlucky and missed it, here is a link to the audio clip of Dr Stephen Foster’s Gresham Lecture.
A few members of Birdshot Uveitis Society decided to meet up and go to the lecture together. For most of us it was the first time we had ever met another person with birdshot. One member wrote to us afterwards and said he was surprised what a positive effect this meeting had on him. This is what he said:-
“I just wanted to say thank you for alerting me to the talk by Dr Foster which despite the pictures was most interesting. I also wanted to say how great it was to meet others with Birdshot. I didn’t think it would make much difference, psychologically, to meet others with the same condition.
I realise now that it has made a big difference and that I got a sense of relief knowing that there are others out there going through the same, and worse (or better), than me. I hadn’t expected the feeling to be quite so strong. ”
We are very much hoping that others will feel the same and benefit by coming along to the Birdshot Day we are holding on September 11th. See Patient Day for further details.
Annie and Rea
A sponsor of the Birdshot Day
