We are pleased to tell you that we have recently been accepted as a member of EURODIS.
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. The link above takes you to the EURODIS website.
Here are some thumbnails from the Birdshot Day. Click on any of them if you want to see an enlargement of the whole image. We hope it will give you an idea of what the day was like. These are just a few of the 130 people who came. There are more pictures to come. Annie
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.
“A clinical trial has found that saffron, the famous Indian spice, can improve vision in patients with AMD, according to new reports. The trials were conducted by Silvia Bisti of the University of Sydney. The trial participants showed significant vision improvements after taking a saffron pill for three months, she said. “Measurements using objective eye sight tests showed patient’s vision improved after taking the saffron pill. When they were tested with traditional eye charts, a number of patients could read one or two lines smaller than before, while others reported they could read newspapers and books again.” The trial was double blind and randomly controlled, involving 25 subjects over six months. Half the group were given a saffron pill for the first three months followed by a placebo, while the other half were given the pills in the reverse order. “All patients experienced improvements in their vision while taking the saffron pill,” Dr Bisti said. “But when they stopped taking the pill the effect quickly disappeared”
This month we are delighted to announce that we have articles about the Birdshot Day and Birdshot in two well known prominent publications. Optometry Today has a short piece advertising the Birdshot Day and NB magazine September 2010, published by RNIB, has a four page spread which includes interviews with Rea, Annie and Narciss, as well as Professor Andrew Dick from Bristol Eye Hospital who is Chairman of the Uveitis Information Group professional panel.
NB investigates Birdshot chorioretinopathy and describes how patients are taking the lead in researching the condition and providing support for those who have it. Continue reading
A Huge Thank You to Everyone who attended the Birdshot Day for patients and professionals
We so appreciated the fact that you spent your precious time not only attending the Birdshot Day, but contributing and making it such a great learning opportunity for BUS and Moorfields and all the healthcare professionals and people with Birdshot who attended.
It was really exciting for us to be able to meet so many people with Birdshot and so many professionals who cared about Birdshot and to watch the buzz generated during the networking and question opportunities. Given that this was our first attempt, we really do want to learn from it and make it even better. All the feed-back you have already given us will be analysed carefully so that we can learn from it.
However, If you have any reflections or feelings or comments or take-home messages about the day, please let us know by posting them here, or emailing us – short comments, long essays, emotional reflections, – whatever you choose to write will be gratefully received by us.
The three of us – (Rea, Annie, Narciss) had a conversation at the end of the day, and, apart from being exhausted, we were so exhilarated by being able to begin to dream that we might form a ‘Birdshot Community’ that can bring about real change in people’s lives. We were also slightly tearful – some of the tears were because it is still an emotional experience for Rea and Annie to meet others with Birdshot and exchange stories; some of the tears were to do with the genuine emotion and strength shown by both people with Birdshot and healthcare professionals.
Please, please do let us know your feelings, comments, reflections, emotions, take home messages or anything that has come to your mind since attending the Day.
Thank you all for attending and making this such a special occasion.
Rea, Annie and Narciss
Both Rea and I have problems with getting our Cellcept prescriptions from time to time due to shortages of the drug at the wholesalers. Birdshot Uveitis Society has written about this difficulty before. Now the Association of the British Pharmaceutical Industry has taken it up. This is something we should all lobby our MPs about, because most of them are totally unaware of the difficulties we face obtaining our monthly prescription.
Urgent action is needed to tackle the worsening problems UK patients face when trying to receive their medicine prescriptions, according to the UK’s Association of the British Pharmaceutical Industry (ABPI). Continue reading
If you have registered to come to the Birdshot Day it would be really helpful if you could print off the days papers and bring them along to the day. We would also appreciate it if you could bring a pen along. We’ll have a few pens for those who forget to bring them – but not enough for everybody! And we think you will need one! Continue reading
Having taken steroids and immunosuppressants for 5 years now, I have developed dry eyes and blepheritis.
My Blepheritis is, I believe, as a result of taking immunosuppressants and gives me itchy, red rimmed eyes. My dry eyes are caused, I believe, by the steroids (which has also given me dry skin and dry hair – what a nightmare!) and the symptoms include a constant feeling of having ‘something’ in my eye, like grit, and a greater sensitivity to glare, as well as itching and redness. Continue reading
Unfortuantely government cut-backs can sometimes mean that specialist uveitis nurses jobs are threatened. These nurses can play a very important role in making sure we stay well while we are on this type of aggressive treatment.
We came across a paper on a “Nurse-led formal health review for immunosuppressed patients with uveitis” by NP Jones and M Pickford from Manchester Eye Hospital which we would whole heartedly agree with. We know from the feed-back we receive from patients with uveitis just how helpful and supportive these specialist nurses can be. Continue reading
We are very grateful to the following organisations and companies who have provided sponsorship for the Birdshot Day which we are holding on the 11th September 2010.
There are still a few places left for the day. It is not too late to book a place. Email us now if you want to come:- birdshot@live.co.uk!
Our grateful thanks go to:-
