Category Archives: Patient info

Birdshot Support Group in USA and Canada

Posted on by
14

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

Posted on by
3

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!

BUS Board meets Moorfields Board

Posted on by
Reply

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

Posted on by
1

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.

Volunteer help for BUS

Posted on by
1

We’d like to introduce you to some of the people who provide voluntary help to BUS.  All of these people either have Birdshot, have a partner or family member with Birdshot or have a professional interest in Birdshot.  It is wonderful the way this has just evolved, and it helps to make BUS a powerful tool for developing a Birdshot community. We are truly grateful to everyone who is involved with BUS.

Lori Bonertz is a Canadian pharmacist and medical editor living in northeastern British Columbia. She edits manuscripts for Dr David Mackey, a specialist in the genetics of eye disease, with a focus on glaucoma. She became interested in birdshot uveitis when a well-informed patient at her pharmacy had questions she couldn’t answer. While scouring the internet, she found the helpful UK BUS website. Her particular interest at work is smoking cessation. She and her Australian husband have four children and they enjoy skiing, hiking, and watching the UK series Top Gear and Sherlock Holmes.  Lori is helping us to make sure that all our news items on research and trials are accurate.

Hamamelis,  a retired pharmacist from the Northwest of England, recently edited  the Birdshot Chorioretinopathy fact sheet for us and has volunteered to proofread future fact sheets.  These two people provide us with our pharmacy expertise – without them, we would never be able to write informative news items for you.

Sue from Lincolnshire is talking to her local ophthalmologist from Hull Hospital to try and find ways of raising Birdshot awareness locally.  She has approached her GP, talked to her local optometrist and made approaches for us to the UK lottery fund for future Birdshot Days.  Sue would value help from others in the Lincolnshire and South East Yorkshire area who want to join forces with her in this initiative.  If there are enough people – (at this stage we don’t know enough in the locality), a local support group could also be formed.  Anyone interested in this should let us know and we will pass the details on.  Hopefully, this will be the first of many local support groups.  If there is anyone else who wants to start a local support group, I am sure Sue will be able to advise – she is brilliant at getting local people interested.

Steve is looking at producing a map of where our members are – we will then be able to see the geographical location of all members.  Currently, all we are able to analyse is what geographical location people access BUS from. Once Steve has completed the mapping, we can use this to look at whether there are ‘pockets’ of Birdshot, and what the implications of this might be.  Thanks, Steve, for progressing our research agenda.

Sandra has been gathering items together to hold a a raffle for BUS amongst her friends and local community.  She enjoys  making hand-made cards and has found that they have sold really well.  We are just about to receive a cheque from her.  Thank you, Sue for developing our first ever fund-raising initiative.  You are an inspiration.

And of course, David our Graphic Artist continues to produce stunning artwork for us. His latest triumph is the label and packaging for the Birdshot DVD. We have other projects where we hope he will assist us into the future.    David’s design skills have really helped us launch Birdshot Uveitis Society  across the world.  Everyone who comes across BUS comments on the very eye catching and effective logo!

Every small initiative helps raise the profile of the Birdshot Uveitis Society and Birdshot Chorioretinopathy.  We have just highlighted a few initiatives more to follow!

We have also started to notice that people with Birdshot do seem to be a very highly skilled group of people – just look at all the initiatives above.  What a powerful and inspirational group of people we are!!!

 

Does the NHS serve us well?  Who attends Croydon Hospital?

Posted on by
3

The Guardian of 22nd July had an interesting article, authored by Polly Toynbee, on the state of our NHS. She provides a specific example, based on cataract surgery in Suffolk, of how criteria for treatment are tightening, and delays are being built into the system.  The concern is that this way of ‘rationing’ healthcare is by no means confined to Suffolk.

Some worrying quotes from the article:

“To qualify for an operation patients need to be so poor-sighted that they can only see at six meters what ordinary people can see at 18 meters: previously people qualified if they could see at six meters what others see at 10. This is such a big difference that the optometrist revealing the new order says it would have excluded 90% of those he had sent for cataract removal over recent months.”

“Growing use of referral management centres means GPs’ letters to consultants are sent via a third outfit where they are scrutinised, often not by doctors but by nurses, physiotherapists or administrators, and returned if they don’t meet ever tougher criteria. That keeps patients off published waiting lists.     The King’s Fund has done research that shows no evidence that  this expensive extra tier of bureaucracy saves any money.”

This really is a sorry state of affairs, particularly for people like us who have rare and fluctuating conditions, and need expert help to retain our visual acuity. For the whole article follow the link below.

http://www.guardian.co.uk/commentisfree/2011/jul/22/nhs-still-at-risk?INTCMP=SRCH

But, what about the NHS services we with Birdshot use?  Have we noticed a deterioration?

We at BUS are interested in receiving feed back from anyone who is experiencing problems in getting NHS services, or getting appointments, or getting appropriate medication, or getting appropriate monitoring and testing.  Please email us with your experiences.

We have a particular interest in people attending the Croydon University Hospital Eye clinic (it used to be called Mayday).  Over the last year or so we (Annie and Rea) have noticed a worrying deterioration in services from the eye clinic there.  It is particularly pertinent to us, as one of the world experts on Birdshot practices from Croydon.  We really don’t want say too much about our own experiences at this stage, as we are looking for feed-back from any of you who attend Croydon.

The reason for needing your feed-back is that we have already been to see the senior management at Croydon, to explain our concerns about the services.  This has led to an agreement that we will provide on-going feed-back from any of our members who attend Croydon and we will keep a check on whether things are improving or not.   If they are not, we plan to take further action, so your help is really, really needed.

We are very happy to do the same for any other hospital where there are real concerns (we need evidence to do this – your experiences are very powerful evidence) so get those emails in to us – we need to make sure that EVERYONE with Birdshot gets a proper NHS service!!!

 

Drug side effects and interaction

Posted on by
Reply

We know that drug interaction and side effects are a worry to a lot of our members. In our search to find information we came across a couple of useful sites. The first is a US based health site that includes clear patient information for both vitamins and supplements as well as medications.

http://www.nlm.nih.gov/medlineplus/druginformation.html

Following on from the post about alternative medications and whether peppermint might have an adverse effect when taking cyclosporine, we were very interested to see that it clearly states on this site that it does.

The second website is run by Mediguard. The interesting thing about this site is you can develop your own profile and list all the medications you currently take. You give a few bits of information about yourself like age, etc. and it will give you a risk rating and tell you which medications interact with other medications that you are taking. This is very handy for people with Birdshot who may find that for the first time in their lives they are on a range of medications. The service also will send you updates on new information that comes out about the drugs you are taking, safety notices etc. A recent email asked us to tell our friends and family about this useful service so we thought we would pass it on.

http://uk.mediguard.org/referral

Birdshot Chorioretinopathy Research Network

Posted on by
Reply

We have finalised a date  for the inaugural Birdshot Research Network meeting, to be held in  Birmingham on Tuesday 18th October.  We have written to a few uveitis consultants, but it is possible that we may not have written to yours.  If you are keen for your consultant to be involved in the Birdshot Research Network you can ask them for us by printing off a copy of the letter that you  will find here  and giving it to them yourself.   We would love as many Birdshot specialists to be involved as possible, but unfortunately spaces at the meeting are quite limited, so they will need to get in touch with us  quickly to let us know of their interest.

Thanks

Annie and Rea

NB Unfortunately this post applies only to people in the UK.


Vitamin D – the Sunshine Vitamin

Posted on by
3

Many of us know from personal experience how osteoporosis can affect one’s quality of life. The drugs commonly used for Birdshot Chorioretinopathy treatment can put you at risk.

Bone health is something that anyone who is on prednisolone for any length of time must discuss with their her/his GP. The risk to your bones from steroids increases with higher doses of steroids (prednisolone) for periods of three months or more. The problem is that when you are first prescribed steroids for Birdshot, you just do not know how long you are going to be on them as no one can be sure how hard the disease is going to be to treat.

The question is what do you do to prevent bone loss?

Vitamin D is a crucial ingredient in the process of absorbing calcium and potassium into the body. Sadly more than 50% of the normal UK population have insufficient levels of vitamin D and 16% have a severe deficiency. (Pearce and Cheetham 2010/Hypponen and Chris Powers 2007).

Vitamin D has a complex absorption pathway. It is produced in the skin by a photochemical reaction that is stimulated by sun rays (ultra violet light). The amount of sunlight required to obtain adequate vitamin D is approximately 20 minutes a day (Holick 2002) outside of peak sunshine levels. So the best way to produce vitamin D is to have unprotected sunshine exposure for about 20 minutes a day, exposing only less sensitive skin parts such as the arms and legs in the morning and afternoon/evening.

Skin pigmentation comes into play as well. If you have dark skin you require approximately six times more sunshine than people with fair skin. Also people with a history of caridovascular disease, obesity, history of cancer, malabsorbtion disease and renal disease have a higher risk of being vitamin D-deficient.

If like most people with Birdshot, you are on immuno-suppressants as well as steroids at some point in your treatment, you are likely to be following the instructions to cover up and use high-factor sun creams to avoid the skin-cancer risks. You are therefore more likely to have low vitamin D levels.

Only a relatively few foods contain substantial amounts of vitamin D. The best sources are oily fish and cod liver oil. Farmed fish may have less vitamin D than wild fish. Egg yolk, oliver and wild mushrooms contain small quantities but the amount in most vegetables is negligible.

You might like to look at this website if you are interested in checking nutritional information for food.

The recommended daily intake for vitamin D is 400 IU per day for an adult and unless we consume this recommended amount, we are all at risk of osteomalacia and even rickets.

If you don’t already take a calcium-vitamin D supplement, please ask your GP about it because you may need it, at least whilst on steroids. (You can have blood tests to determine if you are deficient or not, and tests to check on your calcium absorption.)

Important message to take home:

  • Calcium should not be taken at the same time as mycophenolate mofetil (Cellcept ®) as it may decrease the absorption of mycophenolate by your body and hence reduce the effectiveness of the it. You should take calcium supplements as many hours apart as possible to reduce this potential.
  • It is really important to discuss taking calcium and vitamin D with your GP because, for some people, excess vitamin D can cause problems – e.g. if you have sarcoidosis (which can also affect the eyes) excess vitamin D can make sarcoidosis worse.
  • Weight-bearing exercise does help to promote healthy bones; go to the gym; take the stairs as opposed to the lift; wear a ruck sack with a litre bottle of water in it while you do the house work; go swimming; take up belly dancing or whatever you fancy. Remember that exercise is also great for reducing inflammation, and Birdshot is an inflammatory disease.
  • Exercise will also help to prevent the likelihood of falls and consequent broken bones because your muscles will be stronger.

We cannot emphasise enough that any exercise is better than none!

 

 

Potential Herb and Supplement and Drug interactions

Posted on by
6

Many of us take a range of herbs and supplements in order to try and keep ourselves well throughout our often toxic treatment for Birdshot.  We should always check these herbs and supplements with our consultants, there can be adverse interactions between these and medications we are taking.  We should all remember that just because we can buy them over the counter, this does not mean they are always totally safe, especially when we are taking a range of medications.

We have attached here a PDF which identifies potential herb and drug/medication interactions.  It lists most of the commonly used herbs.

We thought that the most striking ones were:

  • Licorice which increases the level of drug in our body by decreasing drug metabolism (i.e. the rate at which our bodies absorb the drug).   **** (Please see comment number 2 below)
  • Polyphenol – contained in Chamomile and Green tea, lime flowers and Rosemary which is said to reduce the absorption of iron.
  • Bilberry and Tumeric might affect your aniplatelet activity (antiplatelets help ensure we don’t get thrombosis)
  • Valerian may increase the effect of CNS depressants (sedatives or tranquillisers) or alcohol

Hopefully, this article will alert us all to the potential consequences of taking large doses of some herbs, if we are on medication.