Author Archives: Annie

Quinn Wilson Associates raise Money for BUS

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 Kerry Quinn is an amazing, energetic and inspirational person who constantly thinks of others.  She set up Quinn Wilson Associates which specialises in using digital and social media to market organisations to help them become more successful.

On Friday 23rd September, she organised a small social media event at my local art gallery, Lemon Grove in Chiswick, London, and I was invited along.  I have to say I was in total awe of Kerry and her stunning social networking skills.  She is one of the nicest people I have met, and she spent a lot of time with me, giving me advice about how to use digital and social media to improve BUS.

Even better, she held a raffle and decided that all the proceeds would go to BUS – what a wonderful person!

The raffle prizes were a voucher for a hair cut and design at Tony & Guy (thanks to Tony & Guy, Chiswick for donating this) and a wonderful book of paintings by Fabian Perez, a very prominent artist (donated by Silvana Bedford at the Lemon Grove Gallery, Chiswick)

The raffle raised £124.  This adds to our growing pot of money for our next Birdshot Day on 3rd March 2012.

The whole event that Kerry organised was really helpful, as I met so many people who have offered their time for free to help me learn some new skills. and Kerry has said she will think about whether there are other ways in which she can help BUS.

If you want to find our more about Kerry, her website is at

http://www.quinnwilson.co.uk

And if you want to find out more about the Lemon Grove Gallery in Chiswick (Silvana has been so supportive of me, particularly when I was at my worst on medication and struggling to even get the shopping done – Chiswick is just full of wonderful people) her website is at

www.thelemongrovegallery.co.uk/

Team Birdshot just keeps growing and growing!

While I was at Kerry’s networking meeting, I met a solicitor, Eilish Adams from Adams Law and she told me about an interesting scheme called WillAid where, in the month of November, you can seek out a participating solicitor and make your will in exchange for a donation to charity.  You can find out more about this scheme at  http://www.willaid.org.uk/

Rea

Birdshot Support Group in USA and Canada

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Birdshot Uveitis Society has a growing number of members from Canada and the United States. Dagmar Cole, who lives in the US and has had Birdshot for many years, runs an on-line support forum and we at BUS have got to know many of the people who communicate on this support forum. Recently, Karen, who is active on that forum has joined BUS. If you have used Dagmar’s forum, you will know her as MOMDDS. Karen has a background in dentistry, but she has now set up a counselling service for people with low vision. Karen also acts as a catalyst for a Birdshot group in the Toronto area. She says “it is a very casual affair. I think the more we “birdies” communicate with each other, the better chance we have of accessing ideas, research and positivity.” So if you live in Toronto and have Birdshot Chorioretinopathy and you feel in need a bit of support, Karen and the group are there to help.

We thought that BUS members would like to read about Karen’s story.   This is what Karen says on her website:

“I thought I needed a new prescription for my glasses…

In March 2008 I went to the optometrist for new glasses. She couldn’t make my vision 20/20, no matter what lenses she tried. She then dilated my eyes and ….the insides were full of debris!!! So began my journey…

Maybe I was in denial about having a serious problem, but I did not book an appointment immediately. My physician warned me I could possibly lose my vision from a potentially serious problem. That is what it turned out to be – Birdshot Choroidoretinopathy- a rare, potentially blinding disease.

Unfortunately for my uveitis specialist, he had me as his last patient of the day. I had done a lot of research on the disease when I was diagnosed and printed it out in order to ask questions. He took my research papers away, informing me he would give me all the information I would need, which he did. Then for the next hour talked, listened, got frustrated with me, yet clearly outlined the information I would need as I became an eye-disease patient, one who could eventually be very impaired.

The experience was traumatic for me and my family. My future as a working dentist was uncertain, and I was terrified at facing a future with visual impairment. My vision continued to deteriorate over the next 6 months. I needed to stop working. It would take one and a half years to have my vision stabilized with medication and injections, although it never returned to normal.

My challenge was to control my anxiety, depression and panic. No one had heard of my disease, and it proved to be a very rare one. My friends and family tried to support me. How could these people understand what I was going through? Having a rare disease, impaired vision and a massive life change made me feel alone and terrified.

I’ve never been a quitter, my personal motto is “just do it!” Thus my Birdshot journey began. I started researching everything I could learn about the disease and its treatment, used the Internet to find others who had it and created a Toronto online group. I looked for emotional support specifically for people who were developing a visual impairment… it didn’t appear to exist in that form.

I was entering a new phase of life. After speaking to professionals about the need for emotional support in the vision-impaired community, I headed to college for a post-graduate diploma. I graduated as a Social Service Worker, gaining concrete knowledge and experience in counselling skills, advocacy, case management and finding resources in the community. These refined the skills I already had from decades in the health care field and extensive volunteer work.

No one should feel alone during such a traumatic time of change and uncertainty. I therefore decided to be a catalyst for positive change in others, and Vision Support Network Ltd. was founded.”

Please get in touch with us if you want to have your contact details passed on to the Toronto support group.

Annie and Rea

 

Birdshot Day Sponsorship Update

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This is just to let you know that the next Birdshot Day is planned for Saturday 3rd March, 2012 – starting at about 10.30 a.m. and finishing about 4.30 p.m. It is going to be held at the Grange Hotel, St Pauls, London which has a fabulous 5 star conference venue. This has been generously donated by one of the BUS members – we have such amazing members!

Our sponsorship efforts are going well. We have already received a promise of generous sponsorship from Optos who are going to be bringing their wonderful imaging machine along as well as core sponsorship from Friends of Moorfields. We are very grateful for this as it provides us with a really good start. We are working hard to get further funds together so that the costs of lunch and refreshments can be covered. Anybody out there who can tell us where we might get some more sponsorship from?

If you haven’t done so already please put the date of 3 March 2012 in your diaries. We hope the Day will be a really special one for people with Birdshot, their family members and healthcare professionals involved in the care of people with Birdshot.

We have listened to your feedback and will be building on last year’s experience. We hope to be able to take forward the proposal of collecting blood and DNA from patients and family members for research purposes although time might just defeat us as the hoops you have to jump through to allow bloods and DNA to be taken outside of a hospital setting and with a group of patients who do not have their consultants there are quite overwhelming. There is a ton of bureaucracy to get through as well as a considerable logistical problems to overcome. But we remain optimistic. We will also be organising a range of amazing speakers, and, as requested, we will be allowing plenty of time for socialising and networking with other fellow Birdshotters!

Please drop us an email at birdshot@live.co.uk if you are interested in coming and we will send you the registration forms once they are available. We are hoping that this Birdshot Day will be even better than the last, which needless to say was an enormous success!

Adalimumab (Humira ®) Long-term Safety Trial

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Some of us with Birdshot are currently using adalimumab (Humira®). Rea from BUS is one of those people. We recently came across a study looking at the safety and effectiveness of long-term use of adalimumab for people with intermediate-, pan- and posterior-uveitis. This study is currently recruiting by invitation only as you do need to have been involved in the previous related studies in order to qualify.

It is being conducted across 63 locations in the US, Europe and the UK.  In the UK there are three sites: London, Bristol and Aberdeen.

This study is a Phase 3, open-label multicentre study designed to evaluate long-term safety and efficacy of adalimumab in a group of  adult subjects with non-infectious intermediate, posterior, or pan-uveitis.

If any of our members are enrolled in this study, we would be grateful for feed-back on this.

URL: Long term safety and efficacy of adalimumab in subjects with intermediate, posterior and panuveitis

 

 

 

 


Methotrexate Drug Used as an Invitreal Injection

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Some weeks ago we wrote about a novel treatment trial Involving a relatively old immunosuppressant – sirolimus – being used in a new way as an invitreal injection. https://birdshot.org.uk/sirolimus-eye-injections-given-orphan-drug-status/.

Recently we discovered a similar trial, but this time using a different immunosuppressant – methotrexate – as an invitreal injection.

The trial is looking at people who have chronic macular edema (the American spelling – in the UK we spell it oedema) as a secondary or complication to their Birdshot or other form of intermediate or posterior uveitis. The macular edema must affect at least one eye that has not responded to conventional immunosuppressive therapies over the previous 3 months or has recurred while on conventional immunosuppressive therapies. Methotrexate is injected on a monthly basis for 3 months and then as needed. This trial is openly recruiting in Bethesda USA.

This information might be useful for our American members. If you are interested in more information about it you can contact Patient Recruitment and Public Liaison Office prpl@mail.cc.nih.gov (800) 411-1222 TTY 1-866-411-1010

If any of our American members are already on the trial or are thinking of registering for it, we would be really grateful to hear about your experiences. If this therapy proves to be successful, we hope that this will add to the growing range of medications that help us preserve our visual acuity.

Here is a brief summary of the research:-

Uveitis comprises a group of diseases associated with inflammation of the eye that can lead to vision loss. Some people with uveitis also have macular edema (swelling of the retina at the back of the eye). Uveitis and macular edema are treated with medications and sometimes surgery, but treatment does not always prevent vision loss. Previous research has shown that injections of methotrexate into the eye of people with eye disease other than uveitis can help relieve the inflammation, or swelling, that causes macular edema and can slow visual loss. However, it has not yet been approved as a treatment for macular edema associated with uveitis. The objective of the study is to evaluate the safety and effectiveness of methotrexate injections as a treatment for macular edema associated with uveitis. This study requires at least nine visits to the National Eye Institute study clinic over a period of 6 months (24 weeks). Participants will be screened with a full physical and ophthalmic examination, a medical history, blood and urine tests, and additional eye and other tests as needed. An oral dose of folic acid is taken the day after the injection. Participants who tolerate the initial injection may continue to receive injections in their study eye every month for 6 months. After 6 months, participants who show improvement from the injections may be evaluated to receive additional injections every 4 to 8 weeks until researchers end the study.

URL:  Trial using Methotrexate drug as an invitreal injection

Birdshot informal London meeting

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Dear Birdshot Friends

Meeting to discuss the agenda for the Birdshot Day 2012 and to socialise with other people who have Birdshot

This meeting will be held on Saturday 22 October from 12.00 p.m. to 3.00 p.m. at the Green and Fortune Cafe, King’s Place, 90 York Way, London N1 9AG. Directions to this venue, and further information on the venue can be found here: http://www.kingsplace.co.uk/food-drink.

It is a five minute walk from King’s Cross (underground and overground). It is bit of an imposing building – don’t be put off – there are art galleries and music venues inside, and it sits on the canal, so it is really nice inside. There is food and refreshments available and they have a comfy sitting area as well as tables – so we should be OK. We are hoping it wont be too noisy but if it is and if weather permits we can always go outside. Annie and Rea will arrive early and find seats.

More specific directions: As you walk up (northwards from King’s Cross) on York Way, you will see King’s Place on your right, about 300 yards from King’s Cross Station. Stay on the road level, and walk to the centre of the building (don’t take the first entrance, as this is the entrance to the Guardian) and you will see some steps down to a revolving door – go in there and straight in front of you, and to the left you will see the cafe (just before the back of the building).

We are so delighted that so many of you have said that you would like to meet up to discuss ideas for the Birdshot agenda, its really great to feel we have so much support and help available. We’ll allow at least couple of hours and we can carry on for as long as we want to. Don’t worry if you are a bit late, or if you have to leave early – we are very aware that people are planning to travel from some long distances, and we are grateful to you for making the effort.

We are really looking forward to meeting all or you again, as well as some new members who we haven’t met yet.

With all good wishes and look forward to seeing you then.

ANNIE and REA


Lesley Garrett becomes our patron

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Credit: Simon Fowler/Decca Records

The Birdshot Uveitis Society is proud to announce that Lesley Garrett, CBE, the UK’s most popular soprano, has recently become our Patron.

Lesley Garrett, CBE said: “Our eye sight is so precious and it is only when we face losing it that we realise how much we take it for granted.”

Thank you so much Lesley for agreeing to take on this role for us.

Lesley Garrett, appears regularly in both opera and in concert, on television and CD; she has won both critical acclaim and the affection of many fans and music lovers. As a recording artist, she has thirteen solo CDs to her credit and her major television appearances include Lesley Garrett…Tonight, The Lesley Garrett Show the documentary Jobs for the Girls, Viva la Diva and The Lily Savage Show. Lesley was also the subject of a South Bank Show on LWT and her most recent music programmes include The Singer, Sacred Songs and Lesley Garrett – Desert Dreams all for the BBC.

Lesley’s recent television appearances have included the BBC1’s hit show Strictly Come Dancing, and Who Do You Think You Are? and she was one of the judges of Comic Relief Does Fame Academy and for ITV the daily show Loose Women. She also presented two series of Christmas Voices and recently When Royal’s Wed for BBC1. In May 2005 she both sang at and hosted the Classical Brit Awards, filmed at the Royal Albert Hall for ITV. During the autumn she sang the title role in Welsh National Opera’s new production of The Merry Widow and in autumn 2006 she  joined the cast of The Sound of Music as the Mother Abbess in the West End production at the London Palladium. In 2008 she performed the role of Nettie in the West End production of Carousel and in 2011 she returned to The Sound of Music for the final two weeks of the touring production.

Lesley was awarded a CBE in the 2002 New Year’s Honours List for Services to Music.

You can read more about the famous singer on her website:  http://www.lesleygarrett.co.uk/index.php

 

 

BUS Board meets Moorfields Board

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Rea, Annie and three of the new BUS Directors, Peter, John and David, met with the Board of Moorfields Hospital on 1st September to give a presentation on the benefits to the NHS of involving patients in all aspects of their care and in research. BUS used the very successful outcomes of the first Birdshot Day held on 11 September 2010 to illustrate how much more has already been achieved by patients and professionals working in partnership. We are hoping that promoting patient involvement will ultimately mean that people with Birdshot will be less likely to lose their vision, will receive better treatment and will stay healthier.

This link takes you to the presentation that was given to the Board. They were interested to hear first-hand about the partnership and were keen to be supportive. Professor Peng Khaw said that “the patient is central to everything we do at Moorfields: from direct treatment and care through to training of doctors, nurses and other professionals as well as research into better diagnostic techniques, monitoring of disease and the development of safer, more effective surgical and clinical interventions.”

We believe that it is vital to fully understand your treatment and the implications of it, and to feel that you are working in partnership with your consultant and that your consultant fully understands you and the lifestyle you wish to lead whilst living with a chronic long term condition. A lot of research has been undertaken to show that patients who feel more in control, have confidence in their consultant, feel they are being listened to and feel that their consultant sees them as a person (rather than just a set of eyes that are malfunctioning) are likely to have more positive outcomes (and are also likely to save the NHS money!) The term for this is the ’empowered patient’ and we are keen to get this message across to the people that count in the NHS.

We have personal experience of not always being treated as an individual and we have heard from some of our members who have had similar experiences. There have been a number of issues raised with us such as not getting full explanations of the medications and side effects of the medications proposed; not being given choices about appropriate medications; medications being given that cannot be incorporated into the patients day to day life; numerous hospital appointments being given that jeopardise a patients work; previous test results not being available at the appointment, wasting the time of the patient and the consultant; patients sitting in a consultation whilst the consultant discusses their case with other professionals as though the patient is not real; patients not being seen by someone who has expertise in Birdshot and sometimes seeing more junior doctors who are not quite sure what to recommend; etc, etc. We have heard them all! One of our members told us “it’s like you are not even there when you go to an eye clinic appointment“.

This is not to suggest that everyone has these experiences, and there are a number of us who receive wonderful, patient focused care from the NHS. We celebrate and commend the professionals and organisations who have achieved this. BUT, we do want this to be the ‘norm’ and we want everyone with Birdshot to receive this sort of care.

We, at BUS, are really encouraged that Moorfields offered us an hour at their extremely busy Board Meeting, and that they took the time to ask questions and expressed huge interest in what we had to say. They also pointed out that the model we developed of the Birdshot Day has now been applied to Glaucoma, and the first Glaucoma Day will be held on 1 October 2011. As they say, imitation is the sincerest form of flattery, so we must be getting our messages across!

We very much hope that the idea of patient involvement can be duplicated in a similar way for other medical conditions across the country.

For those of you who attend Moorfields, they have set up a patient experience committee and we will keep you informed of what is happening on the committee. If any of you have been invited to contribute to this committee, please let us know, so we can inform our members.

 

Trial drug AIN 457 – a patients view

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A Patients view of the recent study into the treatment of posterior Uveitis with a trial drug – AIN457

In 2007 I was sent to Shrewsbury hospital by my optician after a routine examination for contact lenses. After several months of tests and examinations, I was given a diagnosis of BCR but the treatment I received at Shrewsbury was not perfect and the following year – 2008 – Professor Murray was kind enough to take me as a patient at the Birmingham Eye Centre. Under his excellent care, assisted by Dr Alastair Denniston, my Birdshot stabilised under a regime of medication involving 5mg prednisolone daily (later reducing to 2.5mg) and 1gm of Cellcept daily (later reducing to 500mg). This was matched by a regime of anti inflammatory diet, dietery supplements and daily meditation as well as plenty of fresh air and exercise. In this way, I was able to maintain ‘quiet’ eyes.

In the course of routine visits to Professor Murray’s clinic, I was given routine slit lamp examinations as well as blood tests and annually, ERG tests and more recently, I began to have regular OCT scans.

In spring 2010 I was invited to join a phase three study into the effects of a new drug, AIN457 produced by Novartis, as a treatment for posterior uveitis. This was a double blind trial involving four cohorts – three on varying doses of the study drug and one on placebo. In August the same year I began fortnightly injections of the trial medication and the following month I stopped taking Cellcept as well as beginning to taper off the steroids.

Research on the internet revealed that other trials using the same new medication where also being conducted on patients with RA, Behçet’s Disease, Ankolysing Spondelitis, Psoriasis and Crone’s Disease – a host of auto immune conditions. Indeed, one study had already led to a product name for the new drug, Secukinumab.

By November, I was able to stop prednislone completely while my eyes continued to be free of inflammation, presumably with the benefit of fortnightly injections of AIN457. This situation continued until the following March (2011) when without warning, the study came to a premature halt. I had agreed to take part in a second stage to go through for a further six months so I was disappointed that the new treatment was suddenly unavailable, particularly when I had apparently had such good results. The only explanation from Novartis was that the results of the first part had not been good enough to warrant continuing the study.

After taking advice from Professor Murray and Dr Denniston, I decided to continue without reverting to the previous regime and to carry on without any medication for the time being. Further checks in the following months (most recently in June) have shown no sign of new inflammation. I am next due for a check up in October but as far as I can tell all is well just now. I am waiting to see the full results of the study which I hope will be published soon.

 

Nick Bucknall.

Birdshot Day, Saturday 3rd March 2012

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We are pleased to announce that Saturday 3rd March 2012 is the date for our Birdshot Day to be held in London, UK. Please put it in your diaries. We hope this will be a really special day for people with Birdshot, their family members and healthcare professionals involved in the care of people with Birdshot. More details will follow as soon as they are available.

We have listened to your feedback and will be building on last year’s experience. We hope to be able to take forward the proposal of collecting blood and DNA from patients and family members for research purposes, as well as organising a range of amazing speakers. We will allow plenty of time for your questions to be answered and for socialising with other people with Birdshot.

If any of you live close to London and would like to help us fine-tune the Birdshot Day, we would gratefully accept your assistance. We’re planning to meet in the autumn and want your input into ensuring the day meets the needs of all attendees. Please let us know if you would like to be involved so that we can arrange a suitable venue and time to meet.

 

Annie and Rea