Brandy’s experience
This is Brandy’s experience with finding work and keeping it after vision loss: hopefully it will ease your mind at little.
Brandy is in the US but the information is still relevant.
“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 there 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 than small when you have a disability. Most disability laws and protections, like FMLA (Family and Medical Leave Act) which require a business to accommodate reasonable needs like a bigger monitor, low vision keyboard or task lighting for your desk, exclude small businesses with fewer than 100 employees. FMLA coverage is available after one 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 breaks 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. Birdshot chorioretinopathy 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 one week. First a major bleed destroyed 2/3 of one eye’s vision (all the center sight) and I went colorblind in a matter of days. I had to sell my business in mid-2005 as the reality was my unique skills were my business.
For a year I was stuck in all that I had lost. I had started working full time as a jeweler at 17, and it was gone at 45. I felt I had no marketable skills and that I was just a burden to my 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 OttLite to class. At the end of my first class, the instructor asked me to stay, and 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 number for me to call the next day to speak to Greg.
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 computer monitors, and so on. He showed me how to adjust all the computer settings, and, most importantly, how to adjust font sizes and settings that change almost all text on the web to a type I really found to be the best for me to see. 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, doctor’s appointments, everything. In my second year there, I needed more light than 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 five months last year I had 20/400 vision. I had developed pneumonia on Zenapax (daclizumab) 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 two weeks absence after surgery. He asked me if I had enough sight to come to work and move around safely, forgetting about the work part, and I did. The day before he had 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 doctor’s note stating a vision impairment, call your local Vocational Rehab office about low vision training. Cost ranges from free to a sliding scale by income. It’s in your state’s 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 because they are HUGE in vision rehab and helping those on low income with eye treatment. Google low vision showroom where you live, and look for a low vision optometrist in your area (see link below). For task lighting I love OttLite lighting. There are so many styles, so 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 for your vision not to be an issue. Workarounds 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, and that he would do whatever it takes to have me move into his dept, as 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 – whatever it takes.”
Brandy’s tips
- 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.
- Rimless magnifier with LED light: I own seven of these, no joke. They are for use 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. The instant fix for this and other tools that blend into their environment is to go to hardware and auto parts shops because they sell all kinds of bright and/or fluorescent tapes in different sizes – problem solved.
- American Optometric Association – look for low vision specialists for your next eye exam. https://www.aoa.org/?sso=y.
I’m new to BUS
Posted on June 14, 2010 by Annie
Hello all
I’m new to this forum and don’t have birdshot, rather I have Still’s disease – aka juvenile rheumatoid arthritis + uveitis. But I am very relieved to find this forum, and will post more elsewhere in more detail if anyone is interested, as I am happy to share my experience with long-term use of oral prednisolone.
To make a very long story short, very recently I came off the pred (I was on 20mg give or take a few mg for the better part of 30 years) and have noticed a dramatic decrease in vision.
The short-term solution that has been suggested is to try a triamcinolone injection.
So I read the above posts with interest. I had an intraocular injection as a child many years ago, and it was so distressing and clearly painful that my mother smacked the doctor.
I am now marginally more prepared 🙂 thanks to your insight but have some concerns/thoughts which I thought I’d just throw out there.
- I think I will take a little something to calm myself down ahead of time (I will ensure there are no contraindications).
- I am concerned about the experiences of some posters re: pain/prolonged redness/ soreness, etc, etc, as I was told it would be mildly uncomfortable but I would be ‘fine’ by the next day. Hmmm.
- Also concerned to hear about Liz’s experience with depression, as it is my understanding that direct injection has ‘none’ of the side-effects of oral meds – of which depression is definitely one.
- I can particularly empathize with Liz’s comment about reading a book for pleasure – the very first sign I was losing my sight – and it really took me weeks to notice, because I just didn’t expect it. There were none of the normal signs of inflammation that I’ve had in the past – was it that I just didn’t feel like reading and started making excuses?
I really hope the shot does the trick…
Maggie
This was posted as a comment for the post about intravitreal injections, but I thought I would repost it here so that everyone sees it in case it got buried and unread! Annie
- David on June 20, 2010 at 9:44 am said:
Hi Annie,
Thanks very much for re-posting this and sharing Maggie’s post with us. I’m glad you did, as yes, it did get buried. I’ve never heard of Still’s but there again I’d never heard of birdshot either before I got it.
For me the whole pred story is an on-going saga. I’ve been up and down for over three years now and each time I come down another deterioration takes place. I was told last week that my preds need to go up again and I was immediately filled with dread, although I knew it was coming as my vision is noticeably dirtier than ever.
Preds have a huge effect on my temper and my lack of controlling it. Also the depression that comes with it is a battle I really don’t want to contemplate again.
I too had an injection (although it was for a bleed and not the actual birdshot) and even though I was 41 at the time I pretty much felt like you did as a child. Thankfully it worked and I didn’t suffer any bad effects afterwards.
I’m really interested in an alternative to oral pred. The whole idea that the pred is affecting my entire body when I just need it for my eye seems like something from the dark ages of medicine to me.
Please do share your experience of long-term oral pred use. I’m sure we can all learn something valuable from it.
How are your eyes now? What are your plans for your future medication intake?
Thanks again for re-posting the original comment.
All the best,
D x
- Annie on June 20, 2010 at 10:18 am said:
David, I am really sorry to hear your news – I totally understand how you feel. I too would do anything not to be on oral steroids and dread a recurrence. I remember you telling me some time ago that you felt sure you were flaring but the doctors could see nothing. Goes to show that you have to trust what you see yourself – but when the likely outcome is more steroids it’s something you understandably don’t want to face. We have to find a better way of treating which is not systemic! Annie
- Carole Ball on June 20, 2010 at 4:37 pm said:
It is a great relief to hear that others also suffer from depression since taking prednisolone – I thought it was just me!! I am on my lowest dose yet, 5mg a day, as I now also take CellCept, but this may now be affecting my blood clotting and liver so may have to reduce or come off it completely. This I am sure means an increase to the good old steroid, not something I relish.
Carole
Coming out at work
Posted on February 17, 2010 by Annie
This post has been written by Adrian, a member of the Birdshot Uveitis Society.
Dear All,
I thought I’d write a post about the Disability Discrimination Act 1995 (DDA), sharing my own experience at work.
To gain protection under the DDA you must normally have a disability. It is for you to provide the evidence that establishes that you have a disability.
The effect of a disability is not always obvious in the workplace. There are a number of conditions that can amount to a disability but aren’t always recognised, such as fibromyalgia, depression, dyslexia, etc.
Someone is defined as having a disability (for the purposes of the DDA) if they have ‘a physical or mental impairment which has a substantial and long term adverse effect on her/his ability to carry out normal day-to-day activities.’
Since the Act was amended in 2005, a person who has cancer, HIV infection or multiple sclerosis is deemed to have a disability from the point of diagnosis. They won’t need to go on to show its effects. Anyone who is certified or registered as blind or partially sighted is automatically covered.
If birdshot isn’t affecting your ability to work and you can’t show its effects on you, then your employer might say that he/she doesn’t have to consider you as having a disability from the point of your diagnosis, but only from the point it starts to ‘impair’ you. I would counter this with the fact that progressive conditions amount to a disability if medical or statistical evidence indicates that they are more likely than not to have substantial adverse effect at some stage. As birdshot is a chronic and progressive disease, your employer should err on the side of caution and treat you as an employee with a disability, even if they don’t have to make any immediate adjustments.
From the point of diagnosis, and before, I have been having appointments every four/six weeks at Moorfields, and a week before each appointment I go in and give a blood sample.
When you are having such regular appointments, it is difficult for your employer not to be aware that something is going on. When I received confirmation of the birdshot I was immediately started on a high dose of prednisolone and an immunosuppressant.
For a long time I had felt guilty about the number of appointments I was having and had got into the habit of disguising them through using my annual leave. The combined effect of the diagnosis and the prednisolone was very stressful but I managed to hide my situation from my employer for nearly three months. There came a point, however, when I realised that I could no longer hide what was happening to me and so I calmly rehearsed my story and what I wanted to happen next. I chose Friday late afternoon and met my boss, with the letter from Moorfields confirming the diagnosis and the medication prescribed. I promptly broke down and cried. It was hideous.
Once you have established that you have a disability, the employer has to make ‘reasonable adjustments’ (failure to do so is a form of disability discrimination). This includes time off for rehabilitation, assessment, or treatment.
Later, I was asked to state how the medication was affecting me. Below is essentially what I wrote but each person will be a bit different. In retrospect, it would have been more appropriate for me to have focused on the effects that the medication was having in terms of my performance in post. I have therefore summarised them as follows:
‘My sleep pattern has changed in that I do not get the same deep sleep as previously. It takes me longer to get going in the morning.
The steroids work by suppressing the adrenal glands which sit on top of the kidneys. This has caused me lower back pain.
I have had periods of feeling nauseous.
I have periods of mental confusion and an inability to concentrate for long periods.
My spelling and use of grammar has markedly deteriorated (but I think it is recovering).
I have had periods of forgetfulness when I can’t quite remember what I was going to be doing.
Tasks I would have completed on the day I complete several days later if I have an energy slump.
I haven’t felt able to do as much work in terms of slots as others, as working till seven and getting home at 8:30 has been really tough on the occasions I’ve done it.
On my current level of medication I would struggle to take on a role where I would be expected to initiate and co-ordinate projects, absorb a large amount of information quickly, plan training programmes, manage staff, etc.’
Once you have disclosed your birdshot to your employer, you should ensure that absences connected to your birdshot are recorded separately from other absences. Prednisolone and azathioprine (in my case) reduce your immunity and make it more likely that you will pick up infections which will also be longer lasting. You should point this out to your employer. I was told that the recovery time from an infection would be up to 50% longer than normal. If I would normally be off with flu for two weeks, then now it would be three.
This matters because in a redundancy situation your employer could end up using sickness records as one of the criteria for selection. If you have been off work a lot because of a compromised immune system, your score on this measurement is going to look bad. You’ll want to make sure that Human Resources factor this out so that you are not disadvantaged (or advantaged) in comparison to your fellow workers.
At some point I may well have to use Access to Work. Access to Work is an organisation that can come into your workplace and carry out an assessment and help your employer to defray some of the costs of making reasonable adjustments. It can also help you if you are unemployed or self-employed.
I’m lucky in that my boss has been supportive (in a non-emotional practical way) and so has my company. I am now considered as an employee with a disability.
Adrian
February 18 2010
- Note from Rea:
Adrian’s advice is really sound, and it is important to ensure your workplace knows about your condition. This protects you into the future, should you have any illness due to the medication or to the condition itself.
I too, suffered enormously from the side-effects of medication. Everyone is different. For me, I was unable to tolerate the initial medication regime, and was turned down for an alternative medication regime by my NHS Primary Care Trust. I had to undertake an appeals process which took one year to complete, before being put on different medication that I could tolerate. In the meantime, my work performance suffered, and so did my health. Because I had kept my workplace informed from the very start, they were aware of my difficulties, and made a range of adjustments and allowances. However, even with these, I was unable to continue working. I was referred to the Occupational Health Department, and was retired on the grounds of ill health. Although it is not a course of action I would have wanted to take if I had not been suffering from the side-effects of medication, the benefit is that you are protected financially if you are in a work pension scheme (always check your pension schemes and get advice from human resources or from a reliable independent source). I received my pension early, so did not have to worry about bringing in money (apart from tightening my belt) whilst battling for new medication and trying to remain as well as possible on the previous medication regime. You may also want to think about whether to register yourself as partially sighted/disabled or not. There are a range of benefits that come with registration, but also a range of disadvantages. My workplace Human Resources Department was able to take me through all of these.
Rea
- Carole Ball on February 21, 2010 at 9:36 pm said:
Thanks Adrian, a very interesting article. My immediate boss knows of my birdshot and has never made a fuss about the number of appointments I have had. I have been through some tough times, mainly coming to terms with the fact I have this condition for life, and I can only hope it hasn’t affected my job too much. Hadn’t even thought about telling HR. Maybe I should, as this has certainly made me think. Carole
- Yvonne on March 21, 2022 at 11:06 pm said:
Hi, how do I apply or register as being disabled?
- Annie on March 24, 2022 at 2:06 pm said:
We do not have expertise in this area. The RNIB may be able to help you with this.
Rea’s story – Birdshot troubles
Posted on November 13, 2009 by Annie
Isn’t it interesting how, when life is absolutely perfect and you couldn’t want for anything more – along comes something that you definitely don’t want, just so you can experience a bit of angst!
So, there I was, aged 51, back in 2005, in the perfect job (Director of Social Services) – the one I had spent my whole life dreaming about – and living an amazing life with my weeks being spent in Winchester, one of the most beautiful cities in the UK, and my weekends in London.
I had a little cottage in Hampshire with its back garden running straight down to the river – breakfasts spent communing with the ducks and days spent in my office in the castle, working with amazing Hampshire people and ensuring that we delivered the best possible social care to all those in need.
Back in my home town, London, for the weekend, I took advantage of the wonderful cultural life and saw a play at Shakespeare’s Globe theatre, followed by a meal. Shortly after the meal, I started to feel very strange, aching bones, dizziness, pounding headache and a feeling that I might just be sick! So I made my excuses and went home, straight to bed. What a Saturday night – was woken halfway through the night with violent vomiting, a headache so bad I thought I was dying and at some stage, I passed out. Woke up several hours later with a huge bruise on my face and feeling very delicate. Spent Sunday in bed and went to work in Winchester on Monday, still feeling very fragile. Recovered by Wednesday.
Thought no more about it until I flew to Guernsey on Thursday to learn about how I could deliver better services back in Winchester. On the Friday morning, I kept saying to all my colleagues – ‘this room is a bit dark, isn’t it? Is there a power cut? I can’t see the writing on the papers.’ My colleagues kept telling me that they could see perfectly fine, and I remember thinking: why are they lying to me?
Got on the plane Friday evening and landed in Gatwick and couldn’t find my luggage. I was convinced that it had been lost. All my colleagues found their luggage and made their way back to their homes, and I was left still searching. Went to the desk to complain that my luggage had been lost – very angry – how could it have been lost between Guernsey and Gatwick?
I was shown one lone suitcase from my plane – that’s not it, I shouted. They made me open it. Oh, yes, I said, that’s my property inside the suitcase, but someone has swapped the suitcase – mine was black and red – this one is all black! They thought I was mad. I thought someone had played a really mean trick on me – or just possibly, the flight had done something strange to my eyes.
Went to the station, and couldn’t read the signs for my train. Had to ask. For an independent woman, this was not pleasant. Got on the wrong train with the suitcase that someone had obviously replaced for mine – found I was on the wrong train when an announcement said ‘the next station is Brighton’ – I was supposed to be heading for London. Fed up, tired and with failing eyesight, got a taxi to London. Never mind – tomorrow, it would be back to normal.
Saturday and Sunday, my eyesight got worse. Stop panicking, I thought, it’s all in my mind. Back to Winchester Monday morning, and couldn’t read the reports I was supposed to be finalising. Everything kept blurring. Must be tired, I thought. My colleagues thought differently and forced me straight down to the optician. The optician had a look and said: ‘I don’t know what is going on, but I am sending you straight down to Southampton casualty’. Off I go. See a registrar at Southampton. He looks in my eyes and says: ‘don’t worry, you are just getting old’. OK, I thought, I just need glasses then (never worn glasses in my life, never been ill in my life, never needed even antibiotics in my life, and certainly didn’t believe I was ill).
Back to work and I could see how worried my colleagues were about me, especially as I walked straight into the low beams in my office, banging my head, and then fell down the step out of my office.
That night, in my glorious cottage on the river, I sat watching the television and got really, really scared, as I couldn’t make out the picture. That’s when I broke down and cried – I thought I was going blind. Decided to go to bed and see if a massive amount of sleep would help. Sat down on the bedroom chair, straight on top of a wasp I couldn’t see – no eyesight, sore bum – very bad night.
Next day at work, my colleagues insisted on sending me to a consultant ophthalmologist – good job we were ‘in the business’ and could get access to consultant ophthalmologists – what would have happened to someone who didn’t know how to access the right resources? Off I go to see the consultant – my saviour.
He looks in my eyes and tells me something is going on, but he doesn’t know what. However, he sees inflammation and he puts me straight on steroids to reduce the inflammation – the beginning of another nightmare.
This was September 2005. From then on, I had a variety of tests for the more usual causes of inflammation in the eyes: sarcoidosis, Lyme disease, AIDS, etc, etc. In the meantime, I was having the time of my life – steroids were making me very, very high. I was working 14 hours a day with no problem at all, and then more at home. I thought I was superwoman, and I marvelled in my ability to take three hours of sleep and still be able to perform. My bosses at work thought I was superwoman too!
My staff must have found me intolerable. At 8am, I would tell them about a bright new idea I had thought up overnight. This might be setting up a brand new service, or rationalising a low performing service, or setting up a user panel to help us design new services. By 9am I would be asking them what progress they had made. ‘Off with your heads’ I would cry when they told me they hadn’t even started on my new idea. This, combined with my inability to see (my eyesight was rapidly deteriorating, but the steroids made me no longer care) and my many misinterpretations of what was going on in the work setting because I couldn’t see, read, use the computer, etc, made me a dangerous work fellow, particularly as I was Director. It was a brave member of staff who finally told me how difficultly I was behaving (not that I believed him).
Throughout all of this, I was constantly at the hospital having further tests. Finally, in December of 2005, my amazing consultant (detective extraordinaire) decided to give me an HLA-A29 test. This was a stroke of genius on his part, as I was in such early stages of birdshot that none of the characteristic birdshot lesions were showing.
In January 2006, the test result for HLA-A29 came back positive. A diagnosis of birdshot. What a relief, I thought. Now they know what it is, I will be cured by next week. I vaguely remember my consultant saying to me – this is a chronic disease and we are very early on in the disease process. What a load of nonsense, I thought!
Then started the next nightmare – I was put on high doses of CellCept (mycophenolate mofetil). I reacted really badly to these, and was constantly sick, developed skin problems, night sweats, dizziness, shortness of breath, but I was still high on steroids too. I remember one day, when I was in a committee meeting, presenting to elected members, with the committee room full of the Press. I couldn’t read my script, and I knew I couldn’t let my staff and elected members down, so I improvised. I could see my colleague stiffening beside me, and his foot gently tapped mine to let me know I was off script, but there was not much I could do – so on I went with my improvisation. I could see him getting redder and redder beside me, but I couldn’t see any of the expressions of the Press or elected members, so I assumed I was getting away with it. And I was high on steroids anyway! But worse was to come – I just knew I was about to be sick. Very gracefully, I wound up my presentation, stated that I needed to just check that the video equipment was fully installed, left the room, ran to the toilet, was sick, and returned to the chambers to carry on the debate. Very graciously, no-one ever mentioned this episode to me – did I therefore perform OK, or was everyone just protecting me?
For those of you with birdshot, you know the sheer exhaustion of coping with a toxic medication regime, the side-effects, the deteriorating eyesight, the highs and lows of steroids. Just one episode to illustrate: given I was so high on steroids, I used to go to the gym every day (on top of the 14 hours at work and the hours spent awake in the middle of the night planning). There I was on the treadmill, having done 35 minutes of pounding. But, I can fly, I thought, how very wonderful. So, I speeded up the treadmill and then launched myself over the top and came crashing down on my head. Unfortunately, this gym was in my block of flats in London (and I was on the management committee of the flats). The look of horror on the faces of my fellow gym-goers! I laughed – it’s OK, I said, I can fly! Unfortunately, when you are high on steroids, you often can’t feel pain! I now blush every time I meet my fellow management committee members!
So, I continued to stay up most of the night, continued to lose visual acuity and continued to get sicker and sicker on my medication regime. At the end of 2006 I asked my consultant ‘When will I be cured’? This is a chronic disease, he told me. He also tried very hard to tell me about autoimmune diseases and the part that stress played in them, and suggested I read the book ‘Healing without Freud or Prozac’. An excellent read, but I was on steroids – so I followed this book with a passion – it recommended breathing exercises and meditation, so I added two hours of this to my daily routine of 14 hours work, four hours travel, two hours at the gym and two hours of sleep. I completely missed the part about stress!
Around this time, I started grasping that I may have this disease for life, I may go blind, I may be on medication for the rest of my life, and I was seriously ill with the side-effects of the medication regime. And this medication regime was not improving my eyesight, hence my need to continue on high doses of steroids. So, not only was I potentially wrecking my health into the future, but I was seriously ill (and nearly blind) at the time.
So, now we started talking about different medication regimes, and I started appreciating the impossible situation people with rare diseases are placed in. My consultant has always treated me with absolute courtesy and ensured that I have all the information I need to make decisions, so he equipped me with a range of different medication regimes, warned me about the difficulties of getting any of them and asked me to go away and think and then to get a second opinion from an expert at Moorfields Eye Hospital, London. I did my research, contacted world experts, talked to other birdshot sufferers, got the second opinion and, on the advice of Moorfields, made the decision to try a biological medication that had worked very well on people with less rare autoimmune diseases, and seemed to have fewer side-effects. I was desperate to stop the deterioration in my visual acuity and to feel better.
The long battle started. For anyone with a rare autoimmune disease, you will know that no medication is ever specifically clinically trialled for your disease, and therefore no medication is approved by NICE (National Institute for Health and Care Excellence) for use by the UK’s NHS (National Health Service) in treating your disease. You are also battling the fact that, by its very nature, few people suffer from your rare disease and therefore, there is little ‘clinical evidence’ for the efficacy of various medication regimes for your particular disease. I didn’t know this at the time. I just thought: I will be on new medication soon and my life will return to normal; I can stop terrorising my staff; I can get some sleep; I will stop being sick; I will stop sweating; my skin will stop breaking; the hair all over my face will go and I will lose the two stone I have put on. AND, more importantly, I will start regaining some sight, and no longer have to be helped across the street; escorted when I go out after dark; I will be able to resume driving; know when I am wearing one black sock and one brown sock; win back some of my independence, etc.
So, with the backing of the second opinion from Moorfields (the country’s expert eye hospital), my consultant put in an exceptional circumstances application to my NHS Primary Care Trust (PCT) to get me on to biologics at a cost of some £12,000 a year – expensive, yes, but less expensive than the costs incurred by health and social care if I were to go blind and if I had to give up my job and become dependent on the State. By this time, it was late 2007 and I had already incurred extensive future health concerns with the amount of steroids I had been taking.
Well, can you believe it – my PCT turned me down for the medication. I quote from their letter: ‘The Panel noted the proposed treatment has not been licensed to treat birdshot chorioretinopathy (well, very perceptive of them – nothing has ever been specifically licensed for birdshot or is ever likely to be, because it remains a rare disease). The Panel noted that there is limited evidence to support the use of this treatment (well, only the evidence from one of the country’s leading experts at Moorfields) and that there was no evidence of alternative immunosuppressive drugs being used other than mycophenolate (well, absolutely right – the concern was about steroids, and any immunosuppressive drug would require steroids and this was clearly stated in the application)’.
So, my consultant had to try another immunosuppressant – the fact that CellCept (mycophenolate) is known to have the fewest side-effects and I reacted badly to it didn’t seem to sink in with the PCT. Nor did the fact that it was the steroids that had been severely damaging my health and all immunosuppressants need steroids alongside, whereas biologics don’t. And yes, there is limited evidence in birdshot of biologics’ effectiveness, but there is plenty of evidence for their effectiveness in other autoimmune diseases – and there are limited numbers of birdshot sufferers – and Moorfields had evidence that biologics worked on some of their patients!
So, I tried tacrolimus – and if I thought I was ill before, I thought wrongly. On steroids and CellCept, I was completely mad, but didn’t know it. On tacrolimus and steroids, I was even madder and knew it. I developed a raging temper, I would cry inappropriately, I had a constant headache, I was sick up to ten times a day, I yelled at my staff, I became aggressive and eventually had to be retired on the grounds of ill health in early 2008.
Whilst all this was going on, I was also battling to put in an appeal to the PCT and a formal complaint against the PCT for the grounds on which they had turned me down. I approached my local MP who happened to be a junior health minister and I also approached my local councillors. The local councillors were extraordinarily helpful and made it their business to inform themselves of my illness and all the research that existed: they contacted RNIB (Royal National Institute of Blind People), the Royal College of Ophthalmologists, the UK Parliamentary National Specialist Commissioning Advisory Group (NSCAG), NICE and various other organisations, and became even more knowledgeable than I was about birdshot and about rare diseases.
Finally, in April 2008, the PCT agreed funding on a six-month trial for biologics. Hurrah – but a bit late!!! And only because of the intervention of my local councillors. So now, my birdshot is better controlled, and I have managed to reduce the level of steroids (although I am still on high doses) and I am far less ill than I was, although I still have my good and bad days – I still get every cold going and headaches at least three times a week – but what a relief compared to what I had experienced on the previous medication regime.
Well, the positive thing to come out of all of this is my determination to ensure that nobody else has to go through what I went through. I became a patient expert on my disease, made national and international contacts and went to a Birdshot Conference in Boston, Massachusetts where I met Annie Folkard, another UK birdshot sufferer. Together, we started making waves, joined the Uveitis Information Group and set up a support group for birdshot.
I retain a huge degree of anger even today about my treatment at the hands of my PCT (which was in direct contrast to my treatment by my ophthalmologist). Had I been put on biologics earlier, I would not have had to retire from work; I would not have had to continue taking such very high doses of steroids for such a long time; I would not have lost so much visual acuity; I would not have put myself at such high risk of future bone problems, high blood pressure and heart problems (a drain on health and social care services into the future); I would not have terrorised my staff for such a long time; I would not have alienated all my family members. You do the maths – the health economics – £12,000 per year on my medication, versus the costs of my future potential health care caused by my previous medication regime; the costs of me no longer being a productive member of society (including potential mental health problems from the high doses of steroids); the costs to social care as my visual acuity deteriorated.
Now, work out what happens to someone who has not worked in health and social care and does not understand the system and faces having a rare disease. Firstly – how would they ever have been diagnosed to begin with? Remember, I was told that my loss of visual acuity was due to normal ‘ageing’. It was only when I insisted on seeing a consultant ophthalmologist that I began to have tests to find out what was wrong. Secondly, how would they ever have managed to put together an application for medication and then appeal a decision by the PCT?
The time has come for people with rare diseases (who, together, outnumber those with heart problems and cancers) to receive equitable treatment from the NHS and for health economics to be part of the equation when reviewing medication regimes. It is time for people with rare diseases to get at least ADEQUATE health care!!!!
Annie’s story
Posted on October 19, 2009 by Annie
Birdshot
It’s hard to think back to the time when I first began to have visual problems and when exactly I realised that something bizarre was going on with my eyes.
I remember struggling to drive along unlit roads and thinking – well, I can’t do that any more, I must be getting old!
I remember floaters driving me mad but the optician told me I didn’t need to worry – I didn’t have a detached retina and my maculae looked fine.
I remember frequent changes of prescription and new glasses and still not being able to see properly.
I remember the horizon going grey, fading into nothingness.
I remember struggling to fill in forms with faint grey boxes that I couldn’t see.
Paperbacks whose print faded into the page.
Difficulty in underground car parks, getting keys into the locks at night, finding light switches, deactivating alarms in poorly-lit areas.
I remember waking up in the night and feeling that there was a black patch over one of my eyes.
I remember going out on a sunny day and being dazzled by the bright lights.
I remember eyes streaming as though I had hay fever – something I don’t suffer from now and never did before.
I remember looking up at the sky and realising I couldn’t see the stars.
And then I think back further and I can remember getting lost trying to navigate at night on French roads – and angry scenes in the car as we drove through the night, because I couldn’t read the signposts at night – nor the map.
I remember getting hopelessly lost on a large poorly-lit French campsite and it taking me literally hours to find our tent. My daughter and husband laughing at the idea that I could possibly have got lost.
I remember trying to pitch a tent in the dark in a forest on my own and having an immense amount of difficulty.
I remember a time when I had a complete sparkling white-out at lunchtime and I could scarcely see to drive the mile or so back to my office, having to sit in a darkened room with the computer off, and luckily the episode passed.
I remember thinking – well, I might as well give up my hobby of digital photography – I just couldn’t look at a computer screen for any length of time, let alone edit a photograph or tell if it was in focus.
I remember not being able to thread a needle or mend a black jumper and thinking well, I can’t ever make anything again or be creative.
I started to solve some of the problems. I bought a good reading lamp. I bought some decent sunglasses. I tried to ignore the floaters. I still didn’t know what was wrong.
Then one day, an optician asked me to do a visual fields test, the first one I had ever done. I was on to my fourth optician by this time. I failed the field test in one eye. I went back to do it again, and again. He offered to refer me. I accepted and three months later I was eventually seen at the local eye clinic.
Unusually, my diagnosis was immediate. I was told I had mild inflammation but that the treatment was worse than the symptoms. A blood test confirmed the doctor’s suspicions. He ordered an angiogram. At the time I couldn’t understand it, but there was a look of excitement on this consultant’s face when he told me my diagnosis. I had no idea then just how rare the condition was said to be, and I was bemused by it all. He invited me back to have photos done as if it was some glamour photo shoot. I was to go back every 8 weeks to check that nothing more was going on and told to get back quickly if I flared. I was in shock – I did not believe the diagnosis. After the first appointment, the consultant refused to talk to me about it. He kept me waiting hours for most appointments and often I saw his junior staff who did not have a clue and were scared to say anything and refused to answer my questions.
I asked for a second opinion at a well-known uveitis clinic. They confirmed the diagnosis and my monitoring continued. Despite everything, my ability to read the eye chart through a pinhole remained good. Still no treatment was called for.
At least by then I knew what to ask for. I got regular ERG tests which continued to say things were getting worse and that I should be put on something to control this gradual deterioration.
Eventually, I was offered immunosuppressants. I said I would think about it and I went for a third opinion. I did not want to take toxic drugs if it was unnecessary, and if I did, I wanted to be sure I would see someone who really understood this type of medication.
The diagnosis was confirmed for a third time and treatment started straight away.
My vision improved and has not got any worse. The choice of medication had to be altered a bit, but we seem to have worked out a solution I can tolerate. My eyes are stable and I am confident I am getting the best treatment available to me for the time being.
I am longing for the day when I can get off the 7mg of steroid I have to take daily and the mycophenolate mofetil. I hope the steroid has not done too much damage to my bones, and my liver and kidneys seem to be surviving.
My husband and daughter seem to think that the steroids make me behave erratically, but they understand and are still putting up with it.
I have maintained my job. Good thing too – I have a retired husband and teenage daughter to support.
I am told that my right eye is permanently damaged because I did not get treatment for it early enough. The left eye has improved and recovered. There can be life at the end of birdshot with the right medication, the right ophthalmologist and a positive attitude. I know I am lucky and my fingers are crossed that it stays that way.
Things that help me:
- Good reading lamp
- Good sunglasses – Cocoons Fitovers are good if you wear glasses: good polarised lenses, yellow tint
- Saline nasal spray – helps steroid-induced sinus problems
- Great sympathetic consultant at a hospital that I can get to relatively easily
- Excellent service from the local renal unit for monitoring treatment
- Sharing information with others who have birdshot and the support I receive from them
If the Birdshot Uveitis Society helps just a few people get through the horror of the initial diagnosis and helps to make a few people realise that there is life after ‘the birdshot diagnosis’ and it does not mean you will go blind – then we have achieved something.
Annie