Category Archives: General

Saffron

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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

Birdshot in Scandinavia

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We need your help please!

We have a Swedish person with birdshot who would like to be in touch with others either from Scandianvia or Sweden who have Birdshot Chorioretinopathy so she can chat to someone in her own language about what she is experiencing.

Please get in touch with us  if you  think you might be able to help.   Email birdshot@live.co.uk

Annie and Rea

The right lighting

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For  people with sight loss, good lighting and design reduces risks and increases safety, independence and quality of life.  The Macular Disease Society produce a useful leaflet about this called  Lighting Advice.

Lighting and design at home

Making the best use of lighting is important for everyone, but even more so if you have poor vision. Good lighting in the home is essential, and yet it is often overlooked. Continue reading →

InsuranceWith – specialist insurance

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Rea attended the Genetic Alliance UK, (formerly GIG) conference last week. Among the people she met was Fiona Macrae, a former travel insurance broker.

Fiona suffered from cancer and found it impossible to obtain travel insurance that covered her. For many of us, we experience the same difficulty when mentioning that we have ‘Birdshot Chorioretinopathy’ and are taking immunosuppressants and steroids. Many travel insurance companies will only provide cover that excludes any incident related to our Birdshot (and our medication – in this case it may mean that if we fall sick on holiday, and it can be viewed as being caused by our immuno compromised state, we may not be covered). Continue reading →

AIN457 from Novartis

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We would be interested to learn more about this new drug which is currently being used in a number of studies in the US and we understand that studies in the UK will commence soon. We searched for uveitis research on the Novartis site and came up with the following link http://www.clinicaltrials.gov/ct2/show/NCT00685399?term=novartis&cond=%22Uveitis%22&rank=8

We checked the MERSI website and found that a proof-of-concept study sponsored by Novartis, was carried out in MERSI in Boston US. The purpose of the study was to determine the safety of AIN457 in patients with uveitis and to investigate whether an antibody like AIN 457, which neutralizes the cytokine IL-17A, will safely reduce the intraocular inflammation associated with non-infectious uveitis. Data collected during Phase I of the trial is extremely promising and as a result, Novartis has amended the study protocol to allow more patients to enroll.

A multi-center, international placebo controlled study sponsored by Novartis to determine the difference in the rate of recurrent exacerbations in Behçet’s patients treated with AIN457 versus those given placebo or standard of care immunosuppressive therapy.

The study medication for this trial is identical to that of the Novartis AIN457 trial with the only difference being the delivery method. The preliminary proof of concept trial studying the AIN457 antibody yielded promising data and has resulted in new studies which target specific ocular inflammatory diseases such as Behçet’s.

It is possible that this drug may help people with Birdshot and we will keep a look out for updates about this.

Smoking

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Recent research has shown that individuals who smoke have a 2.2 times higher odds than those who had never smoked of having ocular inflammation, with all anatomic subtypes of uveitis associated with a positive smoking history.

In the study, a positive smoking history had an odds ratio of 1.7 (P =.002) for anterior uveitis; 2.7 (P = .005) for intermediate uveitis; 3.2 (P = .014) for posterior uveitis; and 3.9 (P < .001) for panuveitis.

The odds ratio for panuveitis and cystoid macular edema (CME) was 8.0; for those without CME, it was 3.1, according to the study.

“A history of smoking is significantly associated with all anatomic subtypes of uveitis and infectious uveitis,” the study authors said.

“The association was greater in patients with intermediate uveitis and panuveitis with CME compared with those without CME. In view of the known risks of smoking, these findings, if replicated, would give an additional reason to recommend smoking cessation in patients with uveitis.”

The retrospective case-control medical record review looked at 564 patients who had ocular inflammation and 564 randomly selected eyeclinic subjects. All patients were seen at the Proctor Medical Group between 2002 and 2009.

The study employed a logistic regression analysis. Ocular inflammationwas the main outcome variable, and smoking was the main predictor variable variable, with adjustments for age, gender, race and median income.

So if you are a smoker and you have birdshot, you know what you should be trying to do!  It’s obvious smoking can’t help.

Ophthalmology. 2010;117(3):585-590.