New Patient Information

Birdshotters and those interested in the treatment of Birdshot Uveitis may  be interested in visiting the  Scottish Uveitis Network’s  (SUN) website  http://www.sun.scot.nhs.uk.  This is a relatively new site with clear well written patient information available about a range of immunosuppressive therapies.

You will find their patient information leaflets here.   SUN includes information about the following:- Adalimumab, Azathioprine, Ciclosporin, Infliximab, Methotrexate Tacrolimus Mycophenolate

Sun Treatment Guidelines (108 pages) is  also worth looking at.  It is intended for clinicians and doctors to help ensure consistency of treatment is offered to all uveitis patients in Scotland.   The pathways includes information about other less commonly used drugs and may be particularly of interest if your Birdshot is stubborn or you don’t tolerate the drugs you are on and want to educate yourself about possible alternatives so that you are prepared for what might be suggested to you.

  • Page 56 – 57 refers to drugs normally used to treat Birdshot Uveitis.
  • Page 62 – 67 contains a useful section which deals with immunosuppression and pregnancy.

All the information on this website has gone through a comprehensive committee/review process involving both patients and clinicians from across Scotland and is the result of a considerable amount of hard work by the people involved.

We think that the website is easy to navigate and extremely well laid out.

Annie

for Team Birdshot

 

 

Quilt Raffle

quilt Recently BUS member Maureen,  got in touch with us to say that her quilting group had decided to nominate BUS as the beneficiaries of a  raffle being held at the Royston,  Arts Festival on the 28th and 29th September 2013.

Maureen is a keen quilter and made the beautiful quilt being raffled, herself. We are delighted to advertise the event in case any of our members would like to drop in or even join the quilting group.

Here is a bit about Priory Quilters  which Maureen belongs to:

Priory Quilters started twenty years ago – we are celebrating our birthday with a garden party in August. There have been times when membership has been about 100 but now we have between 20 and 30 members. We meet once a month in the evening and have speakers, do it ourselves evenings and help desks. Also once a month some of us meet in the afternoon. We hold workshops and UFO (unfinished objects) days on the occasional Saturday and usually have one outing a year. Our quilt show is held in association with the Royston Arts Festival every two years. This year the show is on September 28 and 29 in the upstairs room at the Town Hall, Royston Hertfordshire SG8 7DA,  from 10 to 4.30. There is disabled access and entry is free. New members are always welcome.

Thank you so much for taking this initiative.  We wish you the best of luck and look forward to hearing how it all goes and if any member wants to pop into the exhibition, we know Maureen will be delighted to see you.

70th Birthday raises nearly £850 for Birdshot Research

Many, many thanks to BUS member Hamamelis/Opodeldoc for using the opportunity of her 70th birthday to fund-raise for BUS. She kindly organised three celebration parties for neighbours, family, friends and ex-work colleagues, and asked for donations for Birdshot Research in lieu of the presents that one normally receives. The plan was a great success and everyone had a jolly good time. As a result of the generosity of all the party-goers, BUS has received donations worth almost £850. We’d like to thank Hamamelis/Opodeldoc for doing this, and we are delighted to have benefited from her magnificent efforts. Who would have thought that you just had to have a birthday to raise this kind of money?

Thank you so much – we suspect that organising three parties was quite a lot of work, but well worth the effort, and of course it all helps to educate people about our eye condition.

Thank you so much

Team Birdshot

 

Cast your vote please !

Where should the next UK Birdshot Day be held?

We’d like to canvass your opinion on where the next Birdshot Day should be held?  The date we are aiming for is March 2015.

To keep it simple we have 3 suggestions to choose from with the opportunity for you to make your own suggestion if preferred.

It’s a bit of an experiment as we have never used this software before, but do please do cast your votes and let us know which of the following locations you would prefer.

Many thanks

The Birdshot Team

Helping educating future optometrists about Birdshot

Students learning about Birdshot Chorioretinopathy

Students learning about Birdshot Chorioretinopathy

BUS helped at the Fight for Sight Optometry Examinations by sending along Birdshotters to be examined by future optometrist.  Many of the students had never heard of Birdshot Uveitis, so it was a great opportunity to get them better acquainted with the eye condition.

Birdshot is difficult to diagnose even for experienced ophthalmologist because the tell tale lesions do not necessarily appear straight away.   But it is useful for optometrists to know a bit more about it, that floaters,  flashings and inability to see in the dark, a failed field test for example,might be a sign of something more serious going on in the eye that needs to be referred to a specialist for further tests.

Top 10 Priorities for Ocular Inflammatory Diseases

The Sight Loss and Vision Priority Setting Partnership Survey in 2012 asked patients, carers and eye health professionals to identify unanswered questions about the prevention, diagnosis and treatment of sight loss and eye conditions that they wished to see answered. A number of Birdshot Uveitis Society members took part in this survey and raised many interesting questions.  Continue reading