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.
https://audiomack.com/embed/birdshot-recordings/song/mrs-birdshot
Carole’s story is similar to Annie’s. She has been treated for a number of years and has maintained reasonable vision.
https://audiomack.com/embed/birdshot-recordings/song/carole
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.
i have had birdshot now for 2 years and i am 23 years old. i have had a number of treatments and i am losing my sight.
i think we all have to stay positive but it does get me down a lot. and wish i did not have this disease.
Thanks for posting these clips – it’s good to hear other real people – hear their voices and perspectives. I’m still fairly new to birdshot and for me there is definitely an adjustment to being a person who has a chronic condition, takes heavy meds, sees doctors often, gets injections, has moonface, weight gain, crankiness, etc. Sharing experiences helps. Thanks again. Happy New Year!
Newly diagnosed,still adjusting to the news, so it was good to hear from Mrs Birdshot in particular about her experiences and her attitude towards her own diagnosis. I’ll keep popping in to read the latest news!