LX211 submission for approval in US and Europe

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We have been asked by a number of  our members if we know anything about the about the progress of the LX211 trials which highlighted LX211 as potential disease modifying therapy for noninfectious uveitis.  Birdshot is a non infectious form of posterior uveitis.

In February we read that Lux Biosciences was preparing to file for US and European approval.  If the drug is approved it will be the first drug licencensed in the US and Europe specifically for uveitis.  We would assume that licencing in the UK would be likely to follow this.

On 4th August, Isotechnika Pharma Inc, Lux’s US partners sent out a press release which stated that before approval would be given in the US, further trials were needed to check out the drugs safety.  It stated that approval remained on course for Europe. http://micro.newswire.ca/release.cgi?rkey=1808048256&view=64134-0&Start=0&htm=0

We are not sure how long the process takes for licencing to occur but we are watching out for developments.

Experience of IViG treatment?

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Has any one experience of being given IViG for their Birdshot?  We have a member asking us for information about experiences with this form of treatment and how successful it has been.

It would be really interesting and helpful for us to know about individual personal experiences of IviG treatment.  It has been successfully trialled in France for Birdshot but we’d like to obtain more first hand information as, in our view there is nothing to beat that.

Thanks!  We look forward to hearing from anyone who might be able to help this member.

Annie and Rea

Book your place at the Birdshot Day

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Below is the detailed programme for the Birdshot day.  We are very excited that so many excellent expert speakers have agreed to participate at our first Birdshot Day.  This day has been organised by BUS,  Narciss Okhravi  and key people from Moorfields.  The fact that we  have been able to organise such a day is testament to the hard work and commitment of these people.

 

It is a great honour to be able to welcome Professor Phuc LeHoang and his colleague Dr Christine Fardeau to talk about  the latest birdshot research programme that they are carrying out in France.    We will also get the chance to hear about future developments and  will  be introducing the Pan European Birdshot Research Network to you all.    We are  most fortunate to have the help and support of  Professor Miles Stanford of Guys and St Thomas’s NHS Trust,  Mr Carlos Pavesio, Miss Narciss Okhravi and Mr Mark Westcott from Moorfields Eye Hospital, Professor Andrew Dick of Bristol Eye Infirmary and Professor Phil Murray of Birmingham University.

 

Book your places now.  The conference, including lunch, is free,  as we have managed to obtain sponsorship but we do require a £20 refundable registration deposit. This can paid on line here (debit and credit card & PayPal).   Please note that the payment will show that it is being made to the Uveitis Information Group.
You can also pay by cheque and information about how to do this is here.

 

If you are unemployed we will waive the deposit as we do not want people to be prevented from coming due to financial constraint.

 

 


 

 

 

 

Provisional Programme1

Provisional Programme BirdshotDay 30 Jly-2

The Eye Bag

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In case you haven’t heard of it we’d like to tell you about  “The EyeBag” ,  the re-useable warm eye & eyelid compress designed by Yorkshire Consultant Ophthalmologist and Uveitis Specialist, Mr Teifi James.

Eye Bag Co Ltd logo

Health professionals frequently advise daily warm compresses for lots of common eye problems – Dry Eye, Blepharitis, Styes and Cysts. Hot wet flannels are ineffective and compliance is poor. The EyeBag is designed to treat these conditions. The EyeBag is a simple re-usable black and silver silk hot-compress. It is designed to be heated in a microwave for 20-30 seconds just before use and can be re-heated around 200 times. It is usually used twice a day for the first fortnight and several times a week thereafter. Stunning symptomatic improvement means happier patients with less frequent hospital visits.

You can find an EyeBag stockist near you or order online at http://www.eyebagcompany.com/

Tracey with EyeBag

This is such a simple and effective bit of kit for many people with eye problems that come with uveitis.  Blepharitis and dry eye, for example, are possible complications for people with birdshot due to a compromised immune systems.

We’re delighted to tell you about this particular product because it is effective and easy to use.  The Eye Bag company has generously sponsored  Uveitis Information Group’s work, which includes Birdshot Uveitis Society.

Thank you so much.

Annie and Rea

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

Clinical Trials

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Recently Birdshot Uveitis Society registered on the NHS Choices site (this link takes you to the section about Uveitis) and I discovered a  link to a  list of on-going Clinical Trials.  I was quite excited at first until I realised how little appeared to be going on in the UK.

We are often asked about  clinical trials that are going on in the UK and also in the rest of the world. Sadly there are no clinical trials that relate specifically to birdshot, and hardly any current ones in the UK for uveitis.

Uveitis Information Group website has a whole section on clinical trials that you might like to read before even considering one. There is also a booklet published by the UK Clinical Research Collaboration which may be of interest to you.

Understanding Clinical Trials

Uveitis the step ladder approach

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by C. Stephen Foster M.D.

This article is included by the kind permission of Professor C Stephen Foster of the Ocular  Immunology and Uveitis Foundation and Massachussettes Eye Research and Surgery Institution, Boston.   It’s mainly about appropriate treatments  for  auto-immune forms of Uveitis in the USA,  but a lot of what it says is relevant for people with Birdshot Chorioretinopathy in Britain.

“Uveitis of the eye is inflammation inside the eye, specifically affecting one or more of the three parts of the eye that make up the uvea: the iris (the colored part of the eye), the ciliary body (behind the iris, responsible for manufacturing the fluid inside the eye) and the choroid (the vascular lining tissue underneath the retina). Continue reading →

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 →