Dr Tracy Craggs has been listening to people talk about sensitive issues for the past 20 years, including asking Holocaust survivors and members of the armed forces to share their experiences. Her interviews have been used for a variety of educational purposes. She was delighted to be asked to attend our recent Birdshot Day No 3 and listen to some of our attendees talk about their lives since diagnosis.
The inspirational Mike Brace CBE, Chief Executive of VISION 2020 (UK) talks about losing sight in one of his eyes from a firework accident when he was 12, the subsequent development of uveitis in his remaining eye, and how he has dealt with this. He vividly describes life following his sudden loss of vision at such a young age. His talk at the Birdshot Day, was greeted with enormous laughter as he is such an amusing and inspirational speaker. He explains exactly what challenges he faced, and how he never let his loss of vision hold him back from achieving. (Apologies for having to shorten this to the maximum 20 mins. It was a hard choice to decide which jokes to cut.)
Below is the Audioboo link to Phil Hibbert’s talk about his personal uveitis journey which led to him setting up the Uveitis Information Group. Phil’s uveitis onset was sudden. He was a practising dentist prior to developing uveitis, but as you will hear, it didn’t stop him from doing the things he wanted to do. The second part of Phil’s talk about setting up the Uveitis Information Group, will be featured in a subsequent post.
We had so many questions asked at the Birdshot Day. It was a shame there was not more time for them all. These are just a sample.
What is happening with the drug LX211?
Are Retisert implants effective for Birdshot?
Is PDT treatment useful for Birdshot?
Should I be getting treatment?
Does Age at diagnosis affect your prognosis?
Can Birdshot be inherited?
How likely am I to get cancer?
How can I donate my eyes to Birdshot research?
Carlos Pavesio, consultant ophthalmologist is interviewed at the Birdshot Day, 11th September 2010, by Mikael Porath-Petersen about this rare sight threatening eye condition. (18 mins.)
The following audio clips come from the Birdshot Day held in September. They include talks by three of our ophthalmologists experts as well as a short introduction to Birdshot by Rea (patient expert). We also hope to have all of these available as part of a DVD that is currently being produced. Continue reading
It’s a frustrating fact that diagnosis for Birdshot is not easy, even for the experts. That’s why it takes so many of us a long time before we eventually get told what is wrong with our eyes, and even then, sometimes we get told later on, that actually after all it’s not Birdshot, but something else which more than likely needs equally aggressive treatment. Dagmar of Birdshot Lefora website reminds us that we need to remember that:-
“There is NO single test/indicator/marker for birdshot, although everyone seems to think the HLA A29 positive is. It is not. Just one of many areas a good diagnostician will ponder. We all want an answer and the reality is, for some, there is not a definite yes or no as to their diagnosis.
Uveitis = inflammation of the uvea, something has caused that inflammation. Therefore, having uveitis indicates there is something else wrong; there are about 60 or so conditions that are identified as causing uveitis, and for a quite few, the diagnosis is ideopathic or cause unknown. Our ophthalmologists are just like a lawyer who is building a case, bit by bit, with each piece of evidence to draw a conclusion.”
Here are 3 short interviews people with birdshot who attended the Birdshot Day back in September 2010.
Mrs Birdshot has had Birdshot for over thirty years. It took a long while for her to be diagnosed and over the years has received a number of different treatments, some more successful than others. Her’s is a positive story. She has maintained her vision and she doesn’t regard herself as ill and doesn’t want to be thought of as a patient. She wants to have a partnership approach to her treatment with her doctor.
Carole’s story is similar to Annie’s. She has been treated for a number of years and has maintained reasonable vision.
Lesley is a young woman who has been treated for her Birdshot for over 10 years. She’s had a tough time finding the right treatment for her Birdshot and her arthritis, but her current medication is controlling both and she couldn’t be happier.