What Is Your Experience of Having Birdshot? | Reanna7

What Is Your Experience of Having Birdshot?

A major survey is being undertaken across the UK and US into the experiences of people like us with Rare Diseases.  The findings of the research will guide future research and education, so if you can spare 10 minutes to complete the survey, please click on the link below or copy and paste it – once on the site, you will see the link for the survey: Continue reading

What Is Your Experience of Having Birdshot? | Reanna7

Sirolimus

Some of you may know that there have been trials on the drug, Sirolimus, which is given intravitreally or subconjunctivally (i.e. into the eye).

The idea behind this medication is that it should allow us to decrease our use of steroids which have such horrible side-effects, and it tends not to give so many other side effects, and it is not taken systemically (i.e. into our bodies). Continue reading

What Is Your Experience of Having Birdshot? | Reanna7

Birdshot Day 2013 on 28 September in Boston, US

The next Birdshot Day will be held on 28 September, 2013 in Boston, United States.  It is being hosted by Stephen Foster, whom many of you will know.  Stephen has been an inspiration for all of us with Birdshot, and held the very first ever Birdshot Day in Boston in 2008.  It was this meeting that inspired Annie and I to set up BUS. Continue reading