Getting the word out to opticians and optometrists

FD584 Logo Final copy image001Opticians and optometrists are a group of people BUS really want to reach as they are the normal port of call when something goes wrong with your sight.   In my own case I must have gone to different opticians complaining about various symptoms four or five times before one of them realised that there was  something wrong with my eyes and asked if I would like to be referred!

It was with great pleasure that we came across 2 websites for opticians and the public where there was a charity section and where our details could be added:

The “Local Optician” public site is reached by over a 1000 people each day and the “Primary Health Net” for professionals is read by over 7500 professionals, 4 x a month.  They are also going to announce our presence in their regular fortnightly newsletter to their professional members.

We also notice that a link to our website also appears in The Ask the Optician section on the Specsavers website.  specsavers-logo-gbenIt comes under the Eye Health section.   If you type Birdshot into the box it takes you to this link, which in turn provides our website address and the comment: 

“There is a web site devoted to this disease that has all the information you my need”

http://www.specsavers.co.uk/ask-the-optician/what-is-birdshot-chorioretinopathy/

It’s good to see that more and more opticians have now actually heard of Birdshot Uveitis and are taking an interest in it.  Reassuringly,  a growing number of BUS’s UK members have been referred straight to a uveitis specialist after their opticians examination revealed a problem.

 

 

Exciting news from Maryland, USA

BUS recently received an invitation below and would like to advertise the following Uveitis event and encourage members to attend if they live  close by and are are interested and able.  It’s a great initiative and gives you an opportunity to meet others who suffer from Birdshot and learn more about the Birdshot and Uveitis research that is being undertaken at the Wilmer Eye Institute. Continue reading

Talks from the Birdshot Symposium September 2013

Below are links to the different talks which were given at the 2013 Birdshot Symposium, hosted by Stephen Foster from the Ocular Immunology and Uveitis Foundation in Boston USA.  Its a terrific resource of talks given by specialists from across the world, which you can dip into if you want to find out more and  hear what the experts have to say.  Note:  they are aimed at doctors not patients so they are quite technical and detailed so will probably be better watched in separate sessions.  They  are posted on the Ocular Immunology and Uveitis Foundation website: http://www.uveitis.org/video/category/conference

  1. Best Monitoring Practices for BSRC – Henry Kaplan, MD
  2. Identifying the Gaps in Knowledge about BSRC – Albert Vitale, MD
  3. BSRC Epidemiology and Natural History – Albert, Vitale, MD
  4. Determinants of Remission and Cure – Phuc LeHoang, MD, PhD
  5. Birdshot Outcomes with Corticosteroids
  6. Immunogenetics of BSRC – Ralph Levinson, MD
  7. Cortocosteroid Implant Therapy for BSRC – Henry Kaplan, MD, FACS
  8. Navigating the Off Label Use Maze – Frances Foster, MS, NP
  9. BSRC Outcomes with Immunomodulatory Therapy – C. Stephen Foster, MD, FACS, FACR
  10. Biologic Response Modifier Therapy for BSRC – Antoine Brezin, MD, PhD
  11. Definition and Etiology – Antoine Brezin, MD, PhD
  12. Drugs in Development for BSRC – Bahram Bodaghi, MD, PhD
  13. The Unknown or Unaccepted Truths about BSRC – Carl Herbort, MD

3rd May Birdshot social & talk

BUS had a fantastic afternoon on the Phoenician Thames Sailing Barge last Saturday 3rd May, thanks to our hosts John and Janet Hall, and our fantastic speakers, Prof Glen Jeffery from the Institute of Ophthalmology and Chris Hogg a clinical scientist from Moorfields Eye Hospital. Over 30 birdshotters and their friends met socially in the beautiful informal setting. Continue reading

Birdshot support groups grow

Facebook Birdshot Group

The Birdshot Uveitis Society International facebook group has become super active over the last few months.  Its membership has more than doubled with a membership of circa 150,  involved in numerous discussion threads where people are able to chat about their Birdshot, get support from others with the condition or even just have a moan!    If you haven’t visited the group and want to share information with other birdshot sufferers, you can drop in at https://www.facebook.com/groups/Birdshot/. It’s very easy to ask  and answer questions and keep in touch.   Although it  is not as private a discussion venue as the BUS Birdshot forum, (where you have to be a member and logged in to see the posts,) people seem to like the familiar facebook format.  There is real sense of camaraderie amongst a growing international community. Continue reading

T cells found in the retina and choroid of Birdshot patients

Jonas Kuiper from Holland recently contacted us to let us know that a research paper on the characterization of Immune cells in the eye of two birdshot patients has recently been published.  They successfully  identified that the infiltrated cells are predominantly T cells and that they are directed to both retina and choroid. Although this has been assumed for decades, this research provided the first evidence that T cells directed against the eye are present in the eyes of birdshot patients. http://www.ncbi.nlm.nih.gov/pubmed/24530754.

Diagnosis and Treatment of Birdshot Retinochoroidopathy

Birdshot retinochoroidopathy requires early therapy to limit damage, preserve vision and induce long-term remission.

Akbar Shakoor, MD, and Albert T. Vitale MD, Salt Lake City

– See more at: http://www.revophth.com/content/d/retinal_insider/c/42258/#sthash.UodcC2eS.dpuf

Albert Vitale was one of the speakers at the International Birdshot Symposium held in Boston, USA in September 2013. Continue reading

Rare Diseases Day Invitation

Genetic Alliance in partnership with Alexion Pharma have  now successfully raised 2000 hands to feature on a sculpture being made for Rare Disease Day.  They are now extending an invitation to BUS  members (amongst others with a rare disease) to come along to the launch which takes place at London’s Science Museum on 28th February from 12.00 – 14.00. Continue reading