InsuranceWith – specialist insurance

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

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

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.

Green Tea

New Evidence That Green Tea May Help Fight Glaucoma and Other Eye Diseases

ScienceDaily (Feb. 20, 2010) — Scientists have confirmed that the healthful substances found in green tea — renowned for their powerful antioxidant and disease-fighting properties — do penetrate into tissues of the eye. Their new report, the first documenting how the lens, retina, and other eye tissues absorb these substances, raises the possibility that green tea may protect against glaucoma and other common eye diseases.

The whole article can be found by following this link.

http://www.sciencedaily.com/releases/2010/02/100218125520.htm

2 members – email address ERROR

We are desperately trying to get in touch with two members whose email addresses appear to not be working. Hopefully the two members will recognise themselves:

User name: Glass

User name: Sue B

You both registered recently, but your email addresses do not seem to be working. perhaps you entered a misspelled email address? If you could email us at Birdshot@live.co.uk, we can respond to you.

Birdshot Patient Day News

Dear All,

Birdshot Chorioretinopathy Patient Day

You are cordially invited to a Birdshot Patient Day organised by The Birdshot Uveitis Society on Saturday 11th September 2010 from 10.00 to 16.45. It will be held at the UCL Roberts Buildings, Torrington Place, London WC1E 7JE.  Download our leaflet and registration form here.

The Day is a unique opportunity for people with a Birdshot diagnosis and leading specialists, nursing staff and trainees, to meet, share experiences and learn from one another.   We would like as many people with Birdshot to be able to come and share their experiences.  We hope it will be an enjoyable and rewarding day.

You will be able to:

  • meet the experts
  • find out more about new treatments and research
  • take part in smaller breakout groups discussing issues affecting you
  • help shape the future for people with Birdshot
  • have the chance to get questions answered
  • talk to health professionals
  • meet others with the same rare eye condition

We also want to hear about your ideas for the day, so that they can be included.   We would welcome a list of questions you want answered.  If you would like to share your Birdshot story, please tell us so that we can try to include it.  We look forward to hearing from you and hope to meet lots of you soon.

Annie and Rea

Birdshot Uveitis Society  (email: birdshot@live.co.uk)

The Importance of Patients in Research of Rare Diseases

It seems very apt, when we have just finalised the date for our  first Birdshot Patient Day for Saturday 11th September 2010, to come across some research by EURORDIS (the EURopean Organisation for Rare DISeases).  EURORDIS is the voice of ‘patients with rare diseases across Europe’.

The survey has found that rare disease patient organisations (such as BUS, the Birdshot Chorioretinopathy Uveitis Society) play important roles as catalysts for research on their respective diseases. They can also be valuable partners in identifying the gaps and supporting early research in areas not covered by the public or private sectors.

Continue reading