Mixture of a post this time. I finally got in touch with Manx Blind Welfare today, I had put off doing so because my sight is still generally ok. Am I ever glad I did so. I met with a very friendly chap called Dave and now have the loan of a device called a Pebble Mini. It looks like ( I suppose is really) a digital camera and has a lanyard so I can hang it around my neck. It is for reading the labels when shopping, it magnifies the text and allows me to change the colours and contrasts, absolutely amazing! It is not designed for reading large amounts of text but is exactly what I needed. As I mentioned in previous posts my daughter is highly allergic to a number of things and reading labels was becoming an issue. My ordinary glasses are fine for books etc but the ultra small print and horrendous colour choices of some manufacturers had made ingredient labels a struggle. MBW are a charity and there is no charge for the loan of this equipment, which I can keep for as long as I need it. There really are some wonderful people around.

On a slightly different subject I am due to start a new job on Monday. It is only temporary for a few weeks but will be my first time in an office environment in well over 20 years. The last time I worked in an office was a temp job when I was a student, there were no computers in that one so things will be very different in this one. We shall see how it goes. 

Back to eyes!

Back to Stargardts now. I have been unable to drive for 2 weeks while waiting for an eyetest to check if I am safe to do so. It has been very inconvenient and I am very lucky to have some fantastic friends, without whose help my daughter would have been unable to keep up with some of her activities. Well, I had the test today and I passed so am back on the road. Apparently my eyes are compensating for each other’s blind spots at the moment. I am so relieved, doc was as well he said he had been worried that I would not be able to drive but tests showed I am fine still. Don’t know how much longer I will be ok. Next test is in 6 months so we shall see then. Some good views from the bus but I can’t read on buses and everything takes much, much longer. I am going to try to make a point of going for a drive at least once a week and exploring some of the wonderful glens and sights of this beautiful island while I can. I am lucky that public transport is quite good to the village, at least it is if you want to go in and out of Douglas during the day but I have missed the freedom and convenience that a car brings.

Below are two of my paintings of Manx scenes, the first is of Niarbyl, the second of the Sound, two of the places I love over here.

More on EU food labelling.

My original aim with this blog was to write more about my experiences being diagnosed with Stargardts, however tied up with my worries about that is the big worry about reading ingredients labels due to my daughter having several life-threatening allergies. Yes, I wrote ‘life-threatening’, not feeling a bit off or poorly but she could die. The labelling laws are due to change here at the end of next year and as far as I am concerned, good or bad eyesight not withstanding, they are certainly due to change for the worse. My last post dealt with this subject and a number of other people are also blogging about it  Yesnobananas has written some excellent posts, http://yesnobananas.wordpress.com/2013/09/11/update-allergy-labelling-laws/  and also http://yesnobananas.wordpress.com/2013/09/16/an-email-to-the-food-standards-agency/  and again  http://yesnobananas.wordpress.com/2013/09/20/is-no-reason-good-reason-more-on-allergy-labelling/

I have sent 3 comments in as replies to the FSA blog. One of them seems to have vanished, it certainly never appeared on the blog. One is there and my third is below.

Comment on FSA response to concerns about new labelling rules:

I am sorry, you state that publishing the ‘advice’ a year before the new rules come into place is so that consumers have time to get used to them! Why should we have to get used to something that is a retrograde step? You have time, now the ramifications have been pointed out – change the rules. Surely that should be the point of publishing, so that if errors are discovered they can be rectified.
I remember the days before allergen warning boxes were used, we were dealing with intolerances not full blown danger of death allergic reactions then. I have lost count of the number of times over the past few years that I have said how much better life is with the allergen boxes. It really does sound to me that somebody somewhere has completely lost sight of the real goal here.
You state that having the ingredients in one place will make it easier if people visit other EU countries. This is patently untrue unless you are familiar with all the languages. Ingredients lists for countries other than the country of purchase are often even harder to read. At least with allergen boxes you have a head start on the common names of the allergens for that country.
Your reply still does nothing to alleviate any concerns just treats allergy consumers as if we do not know any better. When the consultations with Allergy UK and Anaphylaxis uk took place what form did they take? If there was a question such as. “Would you like to see all the allergen information in one place?’ Then I would expect the answer to be yes. And if a question was ‘Would you like to see allergens highlighted in the ingredients list?” Then again I would expect the answer to be yes. However if the question was ‘Would you prefer to have allergens highlighted in the ingredients list and the elimination ( no longer even voluntary inclusion) of allergen boxes?’ Then I would expect the answer to be NO!
You say that you hope to continue to engage with consumers, does this mean that you will actually listen to us or tell us that you- not dealing with life threatening allergies on a daily basis- know best? After all we must be too emotionally involved or stupid to understand the issues properly because that is how you are coming across at the moment.

The more I think about it the more I find it hard to understand why these new rules are supposed to be an improvement: warning boxes removed, no gluten warnings, allergens highlighted in different ways and no ‘one stop’ name for any particular allergen- you have to know all the variants. And if manufacturers want to help us by adding warning boxes they can’t! This seems to me to be the most stupid part of the legislation. One of the reasons for getting rid of allergy warning boxes is given as the fact that not all manufacturers use them and some will not want to take up the extra space they require. Yes, some products do not use them but why pander to the lowest common denominator. I am quite prepared to be convinced that the new system will be better but so far nothing the FSA have said comes anywhere near to reassuring me, let alone convincing me. As I have previously said I remember the days before the allergy warning boxes and I fear we are returning to them, in spite of allergies being on the rise.

Vision and food labelling

I have been finding it quite difficult to read food labels even with my glasses on. It takes a long time to carefully go through a, sometimes  long, list of ingredients making sure that I have not missed or misread anything. For this reason I find the allergen boxes on food stuff a tremendous help. I remember when my son was little before the boxes came in how hard it was checking everything and on a couple of occasions, in spite of  having perfect eyesight then I did miss things. Fortunately he is intolerant to milk, eggs and certain sweeteners rather than fully allergic. My daughter however, is anaphylactic to milk and eggs, allergic to nuts (never had them and even hospital didn’t want to do a challenge so we don’t know how bad a reaction could be), celery and kiwi. Kiwi is not mentioned in the boxes but then it is not something that is usually added to foods. Milk, egg, celery and nuts are regularly found in the most bizarre and unlikely places though. The FSA guidelines are changing now and in their wisdom they have decided that he allergen boxes are to be banned – FFS FSA!  It is considered better that allergens are highlighted in the ingredients list although there is to be no standardization of how they are to be highlighted. It could be in a different colour (hope they take into account the colourblind when deciding on colour), by underlining ( that is going to be easy to see on a tiny word in the middle of a list-NOT) or by the use of italics or bold type ( to my mind the worse yet did they honestly look at the size of the writing on many lists and think that it will be easy to differentiate between ordinary writing and bold or italics).

I have already got a contact at Manx blind welfare to see what aids will be available to me as my eyesight deteriorates. I am going to need these aids sooner rather than later and hope that I will still be able to read the ingredients lists. I have already not bought products because I cannot read the list clearly enough to be sure and have a feeling that I will not be buying many more things if this ill thought out policy comes into effect.

I would be very interested to find out exactly what research the FSA undertook. I hope that- but suspect that they did not- undertake 3 shopping trips for the same items. Items that would be on  a family weekly/ fortnightly shop so we are talking laden trolley as opposed to basket here. One trip when the ingredient lists did not have to be scrutinised, one trip looking for a number of allergens but using allergy warning boxes to weed out unsuitable items and one trip when the entirety of every list had to be read. Oh and in case anyone thinks that just because you have safely bought one brand of an item before this does not mean that it will always be safe. We have regularly found previously safe items to be unsafe due to recipe changes or manufacturing changes.

Looking at things is getting a bit weird. I can see, I can read but sometimes things are not quite clear. There is a bit of fuzziness. I am pretty sure it is the Stargardt’s but equally if I did not know that was going on I would almost certainly just think my eyes were tired or my glasses prescription needed up dating. The weird thing is that although it is easier to read with my glasses on the fuzziness is still there. I can see a small area that I am looking at clearly but around that is a blurred ring and then the ring disappears and the rest of my field of vision is ok. A similar thing happens when I look at the Amsler grid, the central point and surrounding squares are clear but then there is a sort of shiny grey ring with some tentacles coming out of it. Most of the lines are wavy. I am guessing that the very centre of my vision is still ok but that the area immediately surrounding it is not. With glasses on I can see only a few squares in the centre; without my glasses I can see more squares but as I can no longer read very small print (age!) I need to put the glasses on to read most things.  I wish I did not have to wait until October to see ophthalmologist and ask some questions. I was a bit over whelmed at the main hospital and did not ask much at all.

 

RNIB have been very helpful and I am seeing a disability employment officer later this week. I had already decided to change careers so the more information I can find out now about what is available the better. Don’t want to start something I can’t finish and do want to begin a new, interesting career. Stargardts is not going to get in the way of that!

 

Sometimes I feel like a bit of a fraud talking to Manx Blind welfare and RNIB because, at the moment, my vision is fine; just making some things difficult- like reading ingredients. They have all been wonderful, though and are making the outlook not seem quite so bad.

 

The main thing that scares me is driving. The hospital said that I was fine to drive and probably would be for some time yet. I have notified the DVLA but worry that I will know when I should not be driving. I would hate to drive if I was not absolutely safe but while I can still drive I need to, I am not sure how I will manage to get my daughter to her activities when I can no longer drive. Things are made more complicated because of her severe allergies.

 

Somewhat of a bitty blog but never mind. Fourth instalment soon.

Ok post number 2. I keep being up and down about the diagnosis of Stargardts. On the one hand it is good to have a name to the condition to be able to look things up and read about it. On the other, there is no cure at present and I keep thinking of things I won’t be able to do. One really weird thing that occurred to me was that I probably won’t get to see my grandkids faces. My daughter is still a child and my sons have no intention of settling down yet so what a silly thing to worry about. Especially as I have late onset Stargardts and am lucky in that I have/am seeing my children grow and change.

I am assuming (hoping) that I will have many years before I am legally blind but feel as if I have to rush to do things as soon as possible. We have put off going away on holidays so that the children can do the things they want to do, now I want to go and see the sights, particularly Rome, Vienna and some of the famous museums. Maybe if I give up chocolate we can manage it next year!

 

Reading some of the other blogs has been very  interesting and cheering in an odd way. They prove that it is not insurmountable and when my sight does deteriorate further there will still be lots of things I can do. I do feel in a bit of an odd position though. I am older than most to be diagnosed with Stargardts but younger than most with AMD. I feel a bit of a fraud compared with what others have gone through. The other silly worry is how will I manage to put my make-up on? I don’t wear it very often but I do love to sometimes, I especially like eye make up as they have always been my best feature. Now I am off for a cup of coffee and to do some painting. s my uncle used to say TTFN.

 

Stargardts Journey

This is my first attempt at a blog. I have recently been diagnosed as having Stargardt’s disease and thought I would write about my experiences of Stargardts. It is a form of retinal dystrophy and basically means that within a number of years I will lose my central vision. It can present from childhood, more usually as I understand it, in mid-teens. I am lucky because I have made it to my 40s without knowing about it. It is quite rare and is genetic, usually caused by recessive genes but occasionally a dominant one.

About a year and a half ago I went for an eye test, expecting to get a slightly different prescription for my reading glasses. I had not had a test for several years but my eyesight is generally good so I wasn’t worried. There are some severe allergies in the family which means that I have to read the ingredients labels on everything from foodstuffs to shower gels carefully and I had been struggling a bit with some labels. Kids’ eye tests were fine then it was my turn. The optician said that there appeared to be some changes to my retina, it was probably nothing to worry about but as a precaution I should see my doctor and get a referral to the local hospital’s opthalmology department. That was March, I duly got an appointment for July.

When I saw the opthalmologist he spent ages looking at the back of my eyes, the examination where they shine a bright light in your eye, peer through a magnifying device and ask you to look, up, down, right and left. He was so long doing this that I honestly expected him to say that he could see nothing wrong and did not know why I had been referred. Unfortunately this was not the case. He wanted to do an OCT test and to take some photographs of my retinas to send to the specialist based at St. Paul’s eye clinic in Liverpool for a second opinion. He thought it was unlikely that I would have to actually go to Liverpool.

Anyway, there followed a year of my being sent to Liverpool for some extra tests and examinations. Nobody actually said what they thought was wrong just kept taking pictures and saying they were going to discuss it with the consultant. In the meantime I seemed to be finding it hard to read for as long as I used to without my eyes getting tired but eye tests showed I had good vision. I was very worried when I went clay pigeon shooting for a work’s social event and was awful, I couldn’t hit anything except for the targets that bounced along the ground. One of the experts suggested I closed one eye but when I did so half the gun barrel and the gunsight vanished. I became really worried that I should not be driving if I had blind spots. Fortunately I was back to Liverpool just after this and able to ask the docs. I had a field vision test and it showed up some deterioration but was not too bad and when using both eyes my vision was fine, so I am able to drive. I still did not know what, if anything was wrong with my eyes, from the research I had done online Stargardts did seem a possibility especially after one visit when I phoned up to get the results and was told that they were looking into genetic defects. Finally last week I was given a diagnosis. I have Stargardts, a juvenile macular dystrophy. I was told that there are no treatments yet but maybe in the future, at the moment my eyesight is good and I will have no problem with eye tests for driving and am quite safe to drive but I have to notify the DVLA of the condition and at some point, I don’t know how soon,I will be unable to drive.

My central vision is going to go, I will not be able to read, drive or recognise faces. As my main hobbies are reading, painting and watching TV, when I am not working or ferrying my children around, this is awful news. I have already given up cross stitch because it is so hard to thread a needle even with my glasses and a needle threader. I am really worried about getting around in the future, I will not drive if there is the slightest doubt about safety, I have never driven after even 1 glass of wine, the risk of injuring someone if I am not 100% sure I am safe is too great. I would rather err on the side of caution so I don’t know for how much longer I will be driving. I don’t know what will happen when I can’t read the labels on foods, the wrong thing could, literally, kill my daughter. However now I know what to look for and I should have a number of years to get used to the condition, learn how to manage and put in place plans for when it does become a problem. So that is what this blog will be. A record of how I cope, my thoughts and fears as I get used to living with this diagnosis and how the disease progresses. Wish me luck!

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