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

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/

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

Anyone interested is asked to phone  084 55 55 55 28 and leave their name, address and telephone number or to email audio@infosound.org.uk.

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

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

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).

Problems associated with uveitis are relatively under-appreciated by the general population and ophthalmologists alike. Few people realize, for example, that the third leading cause of blindness in this country is uveitis.

Approximately sixty different things can cause uveitis, and the “detective work” involved in trying to discover what a particular patient’s cause for their uveitis is may be extremely tedious and costly. This “detective work” is much more like diagnostic work involved in internal medicine than like the typical work involved in the practice of ophthalmology. Primarily for this reason, few ophthalmologists choose to specialize in uveitis. Additionally, the care of some forms of uveitis requires the use of systemic medications (nonsteroidal anti-inflammatory drugs, steroids, and/or immunomodulators, “chemotherapy.”) This too, dissuades many ophthalmologists from the practical care of patients with uveitis.

There are, however, several centers around the United States specializing in the care with patients with this potentially blinding problem. Additionally, increasing numbers of younger ophthalmologists are spending time, after completing their training in ophthalmology, getting specialty training so that they may care for patients with uveitis.

Both infectious and non-infectious, as well as malignant causes for uveitis are represented in the spectrum of patients cared for at the specialized centers. Clearly, then, “getting to the bottom of it,” and definitively identifying the cause of the uveitis is quite critical, since proper choice of treatment is so dependent on the underlying cause; the proper treatment for one cause would in many instances frankly be deleterious in the care of patients with uveitis from another cause.

Uveitis on the basis of autoimmunity  is the most common form of uveitis. This uveitis tends to be recurrent.

For uveitis treatment, we employ a “stepladder” approach to the care of our patients with autoimmune uveitis, generally beginning with steroid drops,advancing to steroid injections and/or pills, adding an oral non-steroidal anti-inflammatory medication, and culminating in the use of an immunomodulatory, chemotherapeutic drug if the patient’s uveitis continues or continues to recur each time the steroid medications are tapered and stopped. The reason for our philosophy on this point of a limit of total amount of steroid used stems from the fact that so many potentially avoidable complications occur with open-ended use of steroids. Additionally, we have a philosophy of a complete intolerance to continued recurrences or the continuance of “low grade” inflammation in the eye. This philosophy is born of thirty-one years of experience here in seeing the consequences of allowing such recurrences or of allowing such “low grade” inflammation to persist: slow but inevitable damage to the eye such that vision is progressively lost.

We believe that, as more physicians recognize the lack of progress in reducing blindness secondary to uveitis over the past forty years, they will increasingly abandon the old attitudes of treating this disorder and will embrace a new philosophy of a zero tolerance model for inflammation and will employ a step ladder algorithm in their treatment approach to patients with uveitis.”

If you have a diagnosis of birdshot it is important to be treated by a uveitis specialist who understands about aggressive treatment.  Annie

Brandy is in the US so the links wont apply to the UK but the information is still relevant.  If your in the US like a few of out members they may be useful to you.

“The bottom line is most of us can keep working with the right tools, a little help, being flexible and open minded because rarely is their only one way to accomplish a task! Some jobs, cabbie, truck driver, bus driver, bench jeweler, welder are what they are, and reality is what it is. But maybe your sight will stay good, but reality is most get night blindness or severe glare issues even if they retain good vision.

So learn your options. Big businesses are better then small, when you have a disability. Most disability laws and protections exclude small businesses with less then 100 employees, like FMLA, and requiring a business to accommodate reasonable needs like bigger monitor, low vision keyboard or task lighting for your desk. FMLA coverage is available after 1 year’s employment and 1250 hours worked, so even part-time workers are covered. Briefly it protects your job so you can take days off for appointments or treatment, leave work early because the drugs make you tired, even when you run out of vacation time. Some states even provide more coverage for disabled workers. Businesses receive tax breakes for hiring or retaining disabled workers. Help them earn it! Learn what’s out there with protection from the federal and state!

Here’s my story work wise. BCR was diagnosed in 2002. I was a bench jeweler and designer in NYC for 28 years. As I developed vision issues I simply hired staff to do the parts of detail work I could no longer do. This worked well until 01/05. I suffered 2 major permanent vision losses in 1 week. First a major bleed destroyed 2/3 of one eyes vision all the center sight, and I went colorblind in a matter of days. I had to sell my business in mid 2005 as reality was my unique skills were my business.

For a year I was stuck in all that I had lost. I started working full time as a jeweler at 17, it was gone at 45. I felt I had no marketable skills, and was just a burden to husband.

One day I snapped out of it. I bought a large screen for my home computer. I took every computer course at the community college. I brought my folding OTT light to class. At the end of my 1st class the instructor asked me to stay, he asked about my sight. Then he asked me to wait for a minute while he made a phone call. He came back with a name and phone # for me to call the next day.

Greg had lost and damaged sight from a car accident 25 years ago. He lectures at management/human resources seminars for big businesses about dealing with disabled employees and adaptive technology. He asked if I would meet with him and allow him to do an assessment of my skill potential. I jumped at it. One by one he added adaptive technology and retested me. All the items are relatively cheap. A low vision keyboard, hand and stand magnifiers with the right power and type of lighting, glare screens for CRT monitors and so on. He showed me how to screw with all the computer settings, and more importantly for adjust font sizes and setting that changes almost all text on the web to a type I really found to be the best for me to see. That by using Internet Explorer to access the net I could enlarge every single page. The last thing he did was give me a list of great places for me to work in our area.

A few months later I was employed at a major hospital in a clerical position, where I worked on the computer all day. From day one they have been outstanding with my needs, big screen, low vision keyboard, task lighting, Dr’s appointments, everything. My second year there, I needed more light then task lighting could provide. My work involves the electrical shop. I went and asked the head electrician what he could do for me. That shop starts work at 5am, the next morning when I came to work my work area had lighting like a runway, they had changed all my ceiling fixtures.

Over the past few years my vision has gone up and down, and the job worked with me. For 5 months last year I had 20/400 vision. I had developed pneumonia on Zenapax and the infusions had to stop for a while. Immediately a massive uveitis flare set in. Steroid injections/drops were the only treatment options because of the pneumonia, followed by my existing baby cataract going into overdrive and aging years in a week in my seeing eye. That Friday I told my boss that I had to stop working until my Uveitis flare was over and cataract surgery could happen. Best case was 4 weeks before surgery would happen then at least 2 weeks after surgery. He asked me if I had enough sight to come to work and move around safely, forget about the work part, and I did. The day before he learned that our upfront person was having unplanned open heart surgery and would be out for 8 weeks. He would be overjoyed if all I could do was handle the phones and assist the temp for my job instead. It all worked out beautifully. The week the other person came back I had surgery, and my temp was very comfortable in my job and stayed until I was back full-time.

I know my experience is not unique. For every job that might screw you there are tons that will work with you. The things out in the market that improve our ability to work are many. But you have to go and look for them. With a Dr’s note stating a vision impairment, call you local Vocational Rehab office about low vision training. Cost ranges from free to a sliding scale by income. It’s in your states interest to keep you working and paying taxes.

Google to see if there is a Lighthouse for the Blind near you, call the Lions Club they are HUGE in vision rehab and helping the low income with eye treatment. Google low vision showroom and where you live, look for a low vision optometrist in your area (see links below).For task lighting I love OTT lighting, there are so many styles, find a lighting showroom near you and experience them, then get the best price on the web. Replacement bulbs are easily available. There are tons of small adaptive things you can buy and do at home and work to improve your life.

But you have to be proactive. Learn what you can do to be a better employee and your vision not be an issue. Work arounds are everywhere, is my experience. Look around at work at the other jobs and what they entail. You might find one that will be better suited to your vision if it changes, and in my case pays better. This was the smartest thing I ever did. The job I have now pays good, is nice and challenging. More importantly my boss allows me to work my 40 hours any way I want. For me this means that I can use a vacation day for my appointments, or work 4 x 10 hour days, or work on the weekend, always my choice. I leave early or come in late if the weather sucks for driving, I went to him before I applied for the promotion, and I put my needs on the table. He told me the job was mine for the asking. That he would do whatever it takes to have me move into his dept, my work ethic and people skills far outweighed my limitations.

One of the best things you can do to keep working and enjoying life is have specific glasses for your regular tasks. I have distance, computer, sewing/craft and reading glasses. I set up my home and work computers so the keyboard and monitor are the same distance as they are at work. Small things can bring major improvements. Getting the best task glasses is easy. If you do the task sitting bring the measurements from your eyes to the task as you’re doing it or as you used to do it before your sight change. The right script will bring a positive change; you might find that bifocals are needed to do it best, what ever it takes.”

NB:  The links below of  assorted info are relevant only if you live in the US.

FMLA info:

http://www.dol.gov/dol/topic/benefits-leave/fmla.htm

Types of low vision keyboards and overlays, my keyboard/keys are beige with bold black lettering. For me black sitting on a black tray was no good, but many people seem to like the black with white or yellow coloring. I can’t see yellow (I see a dull white instead) and I think that’s why that board is not right for me:

http://www.amazon.com/s?ie=UTF8&keywords=visually%20impaired%20keyboard&rh=i%3Aaps%2Ck%3Avisually%20impaired%20keyboard&page=1

Rimless magnifier with LED light, I own 7 of these no joke. For at work, bedroom, kitchen, home computer, couch, and in my purses to go everywhere with me! Replacement button batteries are at Radio Shack or the net. The only real issue is the handle is dull gray so it can be hard to see when you put it down. Instant fix for this and other tools that blend into their environment on you. Hardware and auto parts shops sell all kinds of bright and/or fluorescent tapes in different sizes problem solved:

http://www.walgreens.com/store/catalog/Eye-Care/Rimless-Magnifier-With-Case/ID=prod4266908-product

Vocation Rehab by state:

http://www.google.com/search?hl=en&newwindow=1&q=Vocational+rehab+by+state&aq=f&aqi=g10&aql=&oq=&gs_rfai=

American Optometric Association – look for low vision specialists for your next eye exam

http://www.aoa.org/x5428.xml

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.

Lighting and design for professionals and support services

The information below comes from the Pocklington Trust website  which you might like to visit  if you want more detailed information.

lightingconsultancy@pocklington-trust.org.uk.

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).

Fiona was inspired to set up ‘Insurancewith’ which was launched in March of this year. This company specialises in people with medical conditions (rare and common) and provides relevant travel and health insurance cover. The website can be accessed at: http://www.insurancewith.com

Here is a short piece from their website, explaining the services offered:

Insurancewith.com: doing more than just insurance

“Insurancewith has been created specifically to help those suffering with medical conditions get travel insurance at very competitive rates.

We have worked hard with underwriters to explain the medical conditions and secure much better rates. We take a realistic approach to our policy holders illness, meaning that we look at the actual risk, not the perceived risk.

Insurancewith is a trading style of infinity insurance solutions, which in turn is a division of travel insurance facilities group. Established in 1996 our group of companies has been specialising in the distribution of reasonably priced travel insurance for 13 years.

Insurancewith has vast experience in providing travel insurance for people with pre-existing medical conditions. Our policies have been developed by people who have personal experience of cancer and who have previously developed an award winning travel insurance policy aimed at people who have been diagnosed with breast cancer. Fiona Macrae, herself a cancer survivor, heads up and is the driving force behind Insurancewith.

Insurancewith is more than just insurance, working closely with the medical charities that support people with pre-existing medical conditions, we want to acknowledge their support and are therefore donating £1 from every policy sold to charity.

Furthermore, Insurancewith do not shy away from rare complicated medical conditions, that only effect a small percentage of people. Why should these people be refused travel insurance or have to pay exorbitant premiums just because their condition is rare and not understood.

At Insurancewith we aim to provide people with security and peace of mind that their medical condition is fully understood and covered, allowing them and their travelling party to relax, unwind and really enjoy their holiday in the knowledge that should they need to make a claim they are fully covered.”

In discussions with Fiona after her talk, many of us mentioned that we had particular difficulties in getting life and health insurance too, particularly for rare diseases. In regards to health insurance, we related the difficulties that people had experienced in getting Birdshot covered, as health insurance companies see it as a ‘chronic’ condition, and many health insurance policies only cover ‘acute’ or non recurring conditions.

Fiona was very interested in hearing our stories and seeing if she could develop similar models for life and health cover.”

Do members think this would be useful?

Should we also be contacting Insurancewith to see if we can be one of their named charities? Or work in partnership with them?

Over to you

Rea

]]> http://birdshot.org.uk/blog/index.php/archives/3340/feed 1 http://birdshot.org.uk/blog/index.php/archives/3374 http://birdshot.org.uk/blog/index.php/archives/3374#comments Fri, 18 Jun 2010 10:12:32 +0000 Annie http://birdshot.org.uk/blog/?p=3374 The link to a PDF file below is to an interesting booklet produced by European Genetic Alliances Network.  It answers questions about what Personalised healthcare is.

“In one sense , personalised healthcare is nothing new.  It is what doctors have aimed to provide for their patients through the excercis of their clinical judgement, backed up by specialist knowledge and the use of appropriate diagnostic procedures.

However, as research advances and we begin to understand more about he complexity of common diseaes, it is clear that a standard approach to the treatment of various  diseases and disorders does not yield the results patients need.  Increasingly therapies are now being selected based on an understanidng of the underlying genetic components of a condition and how these interact.”

The PDF link will tell you more.

Rea