Mike Brace & Phil Hibbert on vision loss

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.

Birdshot Day in Paris

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We want to alert any one with Birdshot who lives in France that there is a Birdshot Day in Paris on the 26th March 2011. If you want to find out more about it, you need to visit the website http://asso.orpha.net/INFLAM/cgi-bin/w1/ and/or email them for more details. We know that this is an annual day and that it is part of a Birdshot research intitiative. We saw it mentioned on the inflamoeil website and also on a new site started by Sylvain Mignon. He is an artist with Birdshot, who has set up a Foundation in France with the objective of raising money for new Research into Birdshot, being undertaken in France.

http://www.horus-birdshot.fr/topic/index.html

Answers to some questions about Birdshot

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?

People with Birdshot talk….

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.   We will post some more next week.

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.




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Hospitals failure to communicate with GP

Has anyone had the same problems as Real Ale?

Recently his consultant changed his immunosuppressant from Azathioprine to Cellcept (mycophenolate moefetil). He collected his prescription from the hospital pharmacy. This was fine until he nearly ran out and asked his GP for a renewal.

His GP refused to prescribe it (Cellcept) as he hadn’t received a letter from his consultant. His GP, through his surgery, asked him to ask the consultant for a letter explaining why he was now on Cellcept and the dosage. The consultant duly responded and confirmed that he was on 500mg of Cellcept twice a day. Except Real Ale wasn’t. He had been upped to 750mg twice a day… and so his doctor refused to renew the prescription until he had a letter confirming this… Real Ale suggested to his surgery that he could explain to the doctor why he was on this medication and how he should be monitored and what tests were needed. This offer was declined and Real Ale had to write once again to his consultant asking for all this to be made explicit.

In fact it was nearly four weeks before Real Ale was able to get his prescription for Cellcept sorted out. It seems he was a victim of the ‘Shared Care’ protocols which specify (or should) the respective roles of one’s own GP and the consultant in the management of a patient’s condition.

It seems to me that this might be a common problem. I had a battle with my own GP in the beginning, until my consultant very kindly rang him up and explained – the GP had said it was down to the consultant to get in touch with him when I suggested he phone the consultant up, not the other way around! This required phone calls and faxes from me to my consultant’s secretary before the necessary conversation took place.

Our  message to patients is be persistent, you are the only one who can sort the problem out even if you have to act as go between… And if your consultant has promised to write to your GP check that your GP has actually received it!

Saffron

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”

http://www.myvisiontest.com/news.php

Write to your MPs

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