Author Archives: Annie

Help needed with invitreal injections!

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Dave, a registered member of BUS has recently written  to us asking for our members help.   He wants to hear from people who have had experience of invitreal steroid injections as the current steroid treatment he is on isn’t dealing with his inflammation.

Can anyone give him guidance on what to expect and what their experience was of this procedure?

We are happy for you to post comments below or if you want to get in touch with him via birdshot@live.co.uk we will be happy to pass on your experiences to him if you don’t want to do this publicly via the comments section of the website.

Hope someone is able to provide him with info about their first hand experiences of this.

Thanks

Annie and Rea

Saffron

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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. Continue reading →

Green Tea

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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

2 members – email address ERROR

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We are desperately trying to get in touch with two members whose email addresses appear to not be working. Hopefully the two members will recognise themselves:

User name: Glass

User name: Sue B

You both registered recently, but your email addresses do not seem to be working. perhaps you entered a misspelled email address? If you could email us at Birdshot@live.co.uk, we can respond to you.

Birdshot Patient Day News

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Dear All,

Birdshot Chorioretinopathy Patient Day

You are cordially invited to a Birdshot Patient Day organised by The Birdshot Uveitis Society on Saturday 11th September 2010 from 10.00 to 16.45. It will be held at the UCL Roberts Buildings, Torrington Place, London WC1E 7JE.  Download our leaflet and registration form here.

The Day is a unique opportunity for people with a Birdshot diagnosis and leading specialists, nursing staff and trainees, to meet, share experiences and learn from one another.   We would like as many people with Birdshot to be able to come and share their experiences.  We hope it will be an enjoyable and rewarding day.

You will be able to:

  • meet the experts
  • find out more about new treatments and research
  • take part in smaller breakout groups discussing issues affecting you
  • help shape the future for people with Birdshot
  • have the chance to get questions answered
  • talk to health professionals
  • meet others with the same rare eye condition

We also want to hear about your ideas for the day, so that they can be included.   We would welcome a list of questions you want answered.  If you would like to share your Birdshot story, please tell us so that we can try to include it.  We look forward to hearing from you and hope to meet lots of you soon.

Annie and Rea

Birdshot Uveitis Society  (email: birdshot@live.co.uk)

Numbers now registered on BUS

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We thought you might like to know some statistics about the numbers of people registered on the BUS site, as we now have 62 people registered as members.

Although the breakdown might not be a 100 percent accurate, we believe we have 33 people who are based in the UK, including, Northern Ireland and Scotland, 17 people in the USA, 3 people in Canada, 2 people in Denmark, 1 person from France, Norway and Portugal and Australia.

Interestingly we have no-one in Wales, but I think 4 or 5 from Scotland and 1 from Northern Ireland! Continue reading →

Inflammatory Eye Disease lecture

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Professor Stephen Foster and Professor William Ayliffe  – Lecture on Inflammatory Eye Diseases – 24 March at 6.00 p.m.

This is a reminder that Professor William Ayliffe (a uveitis specialist and a Gresham College Professor) is giving a talk on ‘Inflammatory Eye Diseases’ at 6.30 p.m. on Wednesday 24 March 2010 at the Museum of London, London Wall, London EC2Y 5HN. Continue reading →

The Importance of Patients in Research of Rare Diseases

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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.

Continue reading →