I'm still here!

I have been so preoccupied the past months with my grandma but I have not forgotten about this! I've actually learnt a lot from her recently.

The more time I've spent with her the more I appreciate my life. She was taken down overnight, lost all her independence and freedom, and I've been sooking for years over my issues. But I've come to realise how it's not the condition or situation you're faced with, it's the way you react to it and you have the choice of how you want to react and then how you want to feel. She might not be able to walk anymore, stand, get in a car, go out, but she continues to have a smile and laugh. Sure she has some down days but they are few compared to the time we spend laughing (well she mostly laughs at me!).

In all the drama of the past 6 months I've stopped focusing on my issues and my down falls and gotten on with life, and I've found that in doing that my eyes haven't deteriorated, I'm doing everything I've always done and most importantly it doesn't stress me. I've realised, so what I see like crap but it's ok, it's just my tiny flaw and everybody in the world has flaws. And then I look at my nanna while she's teasing me about not having a boyfriend or sitting on her lap and squashing her, and I realise how lucky I am and how you never know when life will be taken from you so there's no use stressing over the insignificant things but to just do what you love.

I no longer think about my eyes all the time. I've decided to keep doing what I want, I'm going to keep studying and working. And most importantly I'll never let anybody tell me I can't do something because of my eyes.

Bionic eye update

Bionic Vision Australia has had vast media coverage in the past week with there bionic eye prototype. They have inserted the device into the first totally blind patient and she has been able to see flashing lights.

Check out their facebook page for links to articles:

Bionic Vision Australia Facebook Page

And here is their website:

Bionic Vision Australia

National Disability Insurance Scheme Petition

To the Australians - you have probably heard the debate about the National Disability Insurance Scheme in the media. I will admit I didn't really think much of it as I hate politics and I didn't really know what it would mean for me being vision impaired.

Guide Dogs have started a campaign to ensure that people who are blind and have vision impairments are not forgotten. As I have previously mentioned, I had help from Guide Dogs with mobility and getting a cane. This was a free service and they came to me. It was so beneficial even though I still have some sight, and the Guide Dogs people were so lovely and supportive and put me in touch with other organizations and people that could help. Which is why I strongly support taking part in this campaign as to keep the support and funding for Guide Dogs to make their wonderful services easily accessible to everybody.

Check out the link below and ENTER YOUR DETAILS!!!!

Vision Loss Australia

My absence

As some of you have noticed I haven't been writing lately. Mainly because I haven't found what I want to say.

My grandmother was diagnosed with a grade 4 (the worst) brain tumour 8 weeks ago and has been in hospital since. Her life and my families lives have been turned upside down overnight. The stress, anguish and emotions can not even be described.

She is a strong, tough, loving and caring person and to see her go through this sucks. She has shown me how precious life is and that I need to go out there and live, regardless of any adversities I may face. And you can't argue with a woman in a hospital bed with no hair!

So I've come to realise that even though I have this disability that effects me everyday, I still have my health and I can still be happy. I can still do everything I want to do despite what other people may tell me. I no longer see my disability as that - a disability- it's just another challenge I have to face, and I will, and I will succeed. Sure I can't be positive everyday and some days I wish I could see better or things were easier, but the fact is I can still live. I can still achieve my hopes and dreams, I might just have to take a different path to get there.

Never give up and try and be positive as much as you can. Accept what you have and find a way to nurture it and turn it into a positive experience. No matter what people say, even though we may be vision impaired we can still do absolutely ANYTHING we want! Where there's a will there's a way!

Being genetically counselled

I had made an appointment to see a genetic counsellor about 3 months ago and the time came this week. I hadn't really given much thought to it to be honest. The main reason I went was to do genetic testing to find out if I actually have the known Stargardt's mutated gene, as I feel like it will be the final thing in accepting my diagnosis, even though I know I do have it.

So I went along to my appointment not knowing what to expect. Normally when I am seeing a doctor I have what I want to know planned out. This time I was under prepared for my usual standards.

The genetic counsellor was really great; she had easy to understand diagrams that showed the most likely way I inherited Stargardt's, and then showed me possibilities of when I have children. The good news is that the chances of my partner being a carrier is quite rare, and thus it's likely my children won't have any chance of inheriting Stargardt's. There's the possibility of testing my partner in future to see if he is a carrier, but to be honest I don't think it would matter because it wouldn't affect my decision to have children if they were at risk. I cope well and have a great life!

The other question is whether to test my younger siblings. There's currently two debates in my household
1. There's not point in knowing because you can't stop it or change it
2. If you knew you could make decisions about careers etc and also use preventative measures like wearing sunglasses at all time and so forth.

It's a hard decision and there will be more debates in our home.

So I have to give blood and it will be sent to the US for testing which will take a few months, which is not good for someone like me who is so impatient.

Bionic Eye

Have a look at this recent video on the bionic eye. It's crazy how maazing technology can be.

Increasing my magnification

As I have mentioned I use Zoomtext on my work and home computers. I have been using it a x2 magnification since I first got it, especially since I didn't like to slide all over the place too much. Recently I have noticed that I am leaning quite close to the computer to read. I didn't want to admit that I probably needed to increase my magnification.

I persevered for a while, but finally thought I'd give it a go just to see what it was like. So I increased the magnification to x3. What a difference it made. I had to slide across the screen more at work, although I could stay put in my chair and not be leaning in touching the screen with my nose!

I'll admit I'm in denial. I didn't want to increase the magnification because then I'd have to awknowledge my eyes are becoming worse. I know it's silly because it would reduce my strain but it is really hard to accept!!!

I also get slightly paranoid, especially at work, as my screen is so large anybody can read what I'm doing (not that I am ever doing anything wrong!), but it's just uncomfortable knowing that if someone looked over they could read it easily.

Of course I've kept my Zoomtext at x2. I'm really quite stubborn.

My purple cane

I got my purple cane delivered in the mail! I was so excited and opened it to find that I had a stick, but no ball. I was a bit confused and thought I could maybe use it to poke people instead.

Turns out they come separate and when I had my mobility session with Guide Dogs I would get the ball.

Which brings me to the mobility sessions. I was quite weary at first, walking around with a cane and even though I don't need it constantly it is a skill I will most probably need in the future. I found the actual sessions to be quite fun and not at all as scary and upsetting as I thought.

We walked my local streets to learn the technique of using a cane, and it is harder than I thought! The less I thought about the more natural it become and I started to feel comfortable using it.

I never noticed before how much I concentrate on seeing where I am walking to the point where I give myself eye strain and it hurts! It's such a feeling of freedom to have the confidence to look ahead or what's around me without worrying about the ground in front of me.

So far I have had two sessions and I look forward to them. I will keep you updated!

DNA Testing

Today I finally got the courage to go an get all the blood sucked out of me. Well it felt like all of it.

When it comes to needles I generally swing two ways - either I'm the bravest person you'll ever meet and it doesn't phase me, or I'm the biggest baby. Today I was a baby.

I went to get my blood taken to send to the Inherited Retinal Diseases Register to get genetically tested. I have been meaning to do this for a while, had many discussions with my family about ethical issues, and finally decided to do it as I would actually get the results. We are also planning on getting my parents blood taken too and possibly my siblings.

So in my nervous state I took myself down to the pathologist, with my friend who had to put up with me. They took SIX VILES of my blood. I don't think I have much more than that and to top it off I have the worst veins and it is always an ordeal to take blood from me.

But with my friend by my side distracting me I sucked it up and tried to look brave while I sat there for what felt like an hour with the needle in my arm sucking out the blood. I must admit it was one of the longest blood tests I've had!

I feel as though this genetic test will 100% confrim my Stargardt's, even though clinically I do have it, but there is always a doubt and 'what if' I have something else?

I encourage any Aussies who haven't already made contact with the Inherited Retinal Diseases Register to do so. They are really helpful. Here's their link.

Inherited Retinal Diseases Register

Updates on Research

Blindness and visual impairment seems to be in the media quite a bit lately. I've gathered the most recent updates for you all to check out.

A study in the UK has successfully inserted implants into three patients retinas. The patients treated had Retinitis Pigmentosa and saw immediate results once the implant was in use. This website has an amazing picture of the implant in the retina and also explains the technology.

Retinal Implant


I've previously mentioned Advanced Cell Technology and their stem cells trials. The latest on the trial is that they were given approval to increase the dosage of stem cells and recruit further Stargardt's patients. This is great news. This trial is a phase 1 study which is looking at finding the maximum dose that can be tolerated and the safety of the technology. All is looking positive for stem cells!

Advanced Cell Technology


Gene therapy is another new treatment that is seeing exciting results. A US university has successfully treated 12 patients who have another inherited retinal disease - Leber's Congential Amaurosis (LCA). The treatment involved injecting a virus with copies of the 'normal' gene into the eye. The patients treated are reported to be able to make out shapes, recognise faces and read large print. This could also be a possibility for other inherited eye diseases.

Gene Therapy

Relationships

Having a visual impairment does not just affect your every day life but also your relationships.

I had been in a long term relationship and was diagnosed with Stargardt's Disease. This had a huge impact. I had to pretty much change my whole life plan. Not only that, I started making rash decisions as I was afraid of what the future would hold.

It takes time to accept diagnosis, and I feel as though I am coming closer to total acceptance. Instead of jumping to conclusions and seeing my condition negatively I have started looking at it in a positive light and all the things I still can achieve, and being legally blind will make it that much more special.

My relationship broke down and I feel as though my condition did play a part in that. I now have fears as to "who would want to be with someone with my baggage". Possibly I have watched too much Jerry Springer 'Excess Baggage' but it always stays in the back of your mind.

I know it sounds silly and there are amazing people in the world but the doubt always hangs over. It's just another way that Stargardt's has affected my life and I'm sure others lives as well.

Sore Eyes

I have been having problems recently with constant sore eyes and migraines. It's really starting to get on my nerves because I can't be outside in the sun or even in bright rooms. The only thing that seems to work is to lay down in the dark and close my eyes, which is very unproductive.

I find I constantly strain my eyes and the only way for me not to do this is to pretty much do nothing. Which is not going to happen.

So I've taken to wearing sunglasses in the house to try and minimise my light exposure. Right now I'm wearing sunglasses in my dark room on the computer (I must look pretty strange), but let me tell you it's helping! Bright light is really painful. Maybe I'm related to Edward Cullen?

As for the constant headaches and eye strain when I don't have a choice but to keep doing what I'm doing - I have yet to fins a solution. I will though!

Until then I will wear sunglasses indoors, and if somebody is boring me I can close my eyes and doze off and they won't even notice!

Guide Dogs NSW/ACT

I had my first contact with Guide Dogs last week, but no, unfortunately not to get a cute little retriever (that I want so badly to cuddle). Not only do they do the obvious guide dogs but also mobility training, advocacy and information services amongst other stuff.

My first appointment was to get to know me and what I might need. It's great because they come to you and help you become more comfortable within your own environment. We went for a walk on the streets around my home, and then I was asked if I wanted to try using a stick. I was a bit scared 1. what if people noticed me and 2. I thought I might look silly, but I realised how stupid these thoughts were and who cares what anyone else thinks?! Not me!

I'm glad I gave the stick a go it was really helpful and I didn't realise that when I walk I pay most my attention to the ground. It means I can look forward instead of watching my own feet.

Guide Dogs offer mobility training, where they come out to you and go through techniques to get around in your daily life. I have organised to do this as I thought I may not need everything at present but it is a good time to learn the skills and start practicing them.

Did I mention I ordered my own stick, yes and it's going to be PURPLE! (Very excited).

I highly recommend Guide Dogs, which are in every state in Australia. They are very helpful, compassionate and knowledgeable and I look forward to keeping in contact with the organisation.

Guide Dogs NSW/ACT

Guide Dogs Victoria

Guide Dogs SA/NT

Guide Dogs Tasmania

Being Legally Blind

I found out last week that I am classified as legally blind. I have actually been legally blind for some time but did not know.

I think I knew in the back of mind that I was, after all I can only read the big letter on the eye chart and if I don't have glasses on the world is a foggy blur, yet I wasn't ready to actually KNOW I was legally blind. I phoned my optometrist to find out my sight and it is 6/60 (20/200).

It's crazy to think I am "legally blind" as I live my life almost as if I would if  I had perfect vision. I have a job in a hospital, I'm studying a masters degree and I like to think I can appreciate nature around me. It made me realise that I, like so many other people, had the perception that if you are blind, you see nothing and you struggle in basic daily activities. How wrong that is!

It is actually quite amazing how much I have subconsciously adapted to my condition. It took a few years for my diagnosis and I probably had the condition way before that. I think because I didn't know what was wrong I found ways to do everything, like read by using my peripheral. I wasn't even aware that I was doing it! It does cause me strain and I have constant headaches but I will find a way to rid myself of them!

Just because I am legally blind doesn't mean I'm giving up on what I want in life, I just have to find a different way to get to it.

Beautiful Art by a Stargardt's Friend :)

I'd like to share artworks created by Jenna who has Stargart's Disease. These are a few of my favourites.

She creates such gorgeous, emotional works and to think she doesn't have her central vision I can't believe how absolutely amazing they are. It is truly inspiring.

Thanks Jenna!

Saffron

I had a phone call from my fabulous optometrist last week about saffron. He told me the about the recent study on saffron supplements and AMD and said I should add saffron to my diet.

I was very excited as this is something easy to do. I got on google and searched for saffron supplements and found an Aussie company who make them as "Macular Health" (Nature's Goodness). They only cost me $40 with postage and I got them within a week.

As I am a self confessed nerd, I found the published article online and this is what I gathered:

• Saffron contains the antioxidants crocin and crocetin which is thought to be a retinal neuroprotectant against oxidative damage. This has been found in a rat model.
• A daily supplement of 20mg of saffron was given over 90 days and then changes in the fERG tests were measured.
• They found significant changes in the fERG results.
• A previous study indicated that saffron's protective effect on the retina is only temporary and disappears if supplementation is stopped, which was shown in a rat model.
• Concludes that "saffron supplementation may induce a short term significant improvement in retinal function in early AMD" and more studies are needed.

This is definitely a step in the right direction for something that could possibly help Stargardt's. The same university in Italy is recruiting for a study on saffron in Stargardt's. Here's the link for anybody interested in participating, or possibly I might go on an extended holiday to Italy.

Saffron Supplementation In Stargardt's Disease

And here is the link for the article on AMD.

Influence of saffron supplementation...

In the meantime, I will continue to take my saffron supplements and see what I can see!

My study solution

I found a quick and easy solution to my study struggles and all I needed to do was ask.

It was as simple as contacting my course coordinator and asking to have everything sent to me in enlarged font so I could print it off. And the next day I had a whole semester's worth of notes for two subjects.

I really appreciate how helpful they were (The University of Sydney) as I know from experience some people put my requests in the "too hard" basket no matter how simple the solution may be.

So thank you, and if you are having the same problems, don't hesitate to speak out and let people know how your sight is affecting you.

How to study with low vision

I have returned to uni this year to study my masters, and I have been having trouble getting back into the rhythm of it all. I study via correspondence, so I do not have to attend lectures, and have all my notes online. I find it hard to read substantial amounts on the computer as I get eye strain and the glare hurts my eyes, plus I have a highlighter addiction and I like to do that on paper (obviously). I have been printing out my notes, but struggle to read them as I have to put them up close to my face and concentrate extra hard, so in turn I lose interest quickly.

I have a hand held magnifier to read paper documents, but I find it quite hard to use, as you have to move it along the line you are reading then when you get the the end to go to the next line, I get confused and re read the same line. It slows down the process of reading and gets quite frustrating. Not to mention if I want to highlight I have to move the magnifier out of the way and then find it in the smaller font. All in all, I don't find the hand held magnifier productive for studying.

So where does that leave me? I've contemplated printing off the documents in larger fonts, although they are quite substantial in length already and I'd use hundreds of pages of paper.

The issue is causing me to avoid studying because it frustrates me and I end up with migraines and eye strain.

Any suggestions?

More to add for "not just a vision issue"

I've had an overwhelming response from my post "Not just a vision issue" so I have put together a list of links that some of you might find useful for counselling, psychology or even just to have a chat. These are all Australian organisations and if anybody has any from overseas please share.

Most importantly, stay positive and you are not alone :)


Lifeline 24 hour telephone support - 131114
Lifeline

Beyond Blue - Not just Depression but anxiety, bipolar disorder and other mental illnesses
Beyond Blue

Headspace - Youth Mental Health for people 12 to 25 years old
Headspace

Seeing sunglasses

I made one expensive purchase last week and I am so excited about it. I have the trouble of not being able to wear sunglasses outside when I am at work etc as I need my glasses to see in the distance. I can't wear contacts to work because then I can't see what I am doing up close. So I finally had a smart thought of getting lenses put in a nice pair of designer sunglasses.

I went to my optometrist to find out if there is a particular size I can get, and he told me "just not too big". Of course I wanted the biggest glasses I could find!! I ended up picking a gorgeous Gucci pair.

They are the best thing yet! I can go around looking stylish and can see at the same time! The funny thing is, I thought I bought a black pair, but when I looked at them in the sun they are blue!

I highly recommend for anybody that hasn't yet done so to get your lenses out in sunglasses, especially the young gen who don't like the glasses that tint in the sunlight!

Not just a vision issue

So it’s taken me a while to be able to bring this up on here because it’s quite a complicated topic. Not only was I diagnosed with stargardt’s disease, but I have slowly developed an anxiety disorder which can be attributed to my diagnosis.

It is such a hard thing to deal with when you  are young, feel like you are in your prime and your life is just about to start, and bam, you’ve got an incurable disease that you can’t hide from because it’s in your eyes. I will admit I act quite tough about the situation but I definitely have my low times over the issue and I let myself have a cry over it before I tell myself to harden up and that I have a whole life to live for.

Being told you can’t see well is such a blow, even if you realised it prior, but I started doubting myself in so many ways. It went from not being able to drive, to being scared to be in a car because it is hard to read signs and see what’s ahead of me.

As a person who always has to be in control and needs to know EVERYTHING about what is happening to me and in the world, I found it quite confronting when I was told of my diagnosis. I was scared to go out at night because I felt I couldn’t see and I was in total darkness, whereas I think this is partly psychological as my EPS study showed my night vision isn’t affected.

I think there is not only the issue of dealing with vision impairment but also the other issues that arise with it; it’s not just about finding ways to get around or ways to work, but also how it affects us psychologically, because I am sure I am not alone with this. Not only am I dealing with my vision impairment, I am also dealing with a severe anxiety disorder that is life limiting. Double whammy or what.

So I encourage you all to speak out because we are in this together, and nothing is more helpful than hearing that someone else is experiencing the same thing.

Donate!

Dr. Terry Diamond, who works in the same hospital I work at, is running 7 marathons in 7 days across Australia next week. He is doing this to raise money for the disease Retinitis Pigmentosa, which is similar to Stargardt's in that it is a retinal disease that causes blindness. He hopes to raise $100,000 for stem cell research for the disease and related diseases.

Here's the link to donate and support!

The Eye-Con Run

Gene Therapy

I was kindly sent a powerpoint presentation from a university in the Netherlands about recent studies of gene therapy for Stargardt's Disease and another genetic disease. Coincidentally, I have been working with a dutch medical student (who is a great friend!) and we had some fun translating the presentation into English for you all to have a look at.

Please be mindful of the translation!

Gene Therapy Presentation UMC St Radboud

Fishies to help Stargardt's?

I was looking up the research on Stargardt's and found that a group were testing the effects of DHA (fish oils) on improving vision of people affected by Stargardt's. The results are yet to be published so I decided that I would do the experiment on myself, as taking fish oil supplements couldn't hurt and would probably benefit me in other ways.

The only thing is I hate fish and anything fishy. If I get a piece of grilled fish for lunch I ask the seafood shop for the most un-fishy fish (and everybody usually laughs at me). Whatever I get I still have to scrunch my nose while I eat it.

So I went to my chemist to look at the fish oil supplements, which I have been meaning to do for a while since I don't eat fish, and thought this was a good motivation. I'd looked up the amount of DHA that was needed and I'd have to take around 10 capsules a day. So the pharmacist recommended I try the liquid fish oil that was more concentrated and had a minty flavour.

It took me a couple of days to actually open the bottle because I was disgusted by the idea of having squished fish oil, and when I did I was horrified. It smelt of peppermint fish!! I sucked it up and tried to drink it. It would have to be the most disgusting thing I have ever tasted. I washed it down with orange juice but I could still taste the mintiness on my breath. I could even smell the stuff on my hands and it made me gag.

So as you can imagine, I haven't touched the stuff since. I think I might have to get some tablets instead. Or wait until the study is completed and hope somebody has invented fish oils that are actually edible!

Australian Inherited Retinal Diseases Register

I have previously posted about the Australian Inherited Retinal Diseases Register based in Sir Charles Gardiner Hospital in WA. I plead with anybody who hasn't yet registered to give them a call so that we can get a better idea of how many Aussies are affected.

I spoke to the Research Assistant, Ling, who kindly gave me the statistics they have collected so far. Currently there are 147 registered as being affected by Stargardts. Considering we have around 22 million people in the country, that is 0.000735% of the population (if my maths is correct). So let's spread the word and see if we can get all the Stargardt's people to register!

You can also donate your DNA to their DNA bank for future research. I have also convinced my mum, dad and siblings to give blood too (after I told my sister it was a needle in her rear end and she believed me!), so that in the future researchers can analyse the genetics of the disease.

For more information check out the website below or contact Ling Hoffman (08) 9346 2449.

IRD Register

Media giving vulnerable hope

The latest headline reads:

"Once they were blind, now they see. Patient's cured by stem cell 'miracle'"

This article was dated 24th January 2012 and posted on The Independent website (link below).

Are we not getting a little ahead of ourselves?

The article refers to the Advanced Cell Technology stem cell trials and their latest findings. As previously mentioned, they have treated two patients, one with Stargardt's, with RPE embryonic stem cells. This trial is purely for safety, and is not measuring the effectiveness of embryonic stem cells in the treatment of the diseases.

It is very exciting that of the two patients, so far they have not experienced any adverse effects - tumours or reactions. From what I have read it has been 4 months since the patients received the cells and they are doing well, that is to say are not doing badly.

Because the ACT trial is proving to be safe, another 2 Stargardt's patients will receive the stem cells, one in the US and one in the UK. This is great news for stem cell research.

The patients that have been treated have also stated improvement in their vision. ACT are not focusing on the visual improvement in this stage of trials and there is a link below to the published report.


So I am putting my skepticism hat on again and I am angry that the media can claim that this is a 'miracle' and 'the blind can see again.' These trials are for SAFETY and are not measuring whether stem cell treatment actually works! To say that the blind are cured is getting just a little too ahead of what is actually going on. ACT have stressed that these trials are safety trials and the media should pass the information to the public, instead of giving false hope to people like me with Stargardt's.

There is still a long way to go with stem cells. I will continue to wait in anticipation.

Below are links to recent articles about the ACT trial.

The Independent

Advanced Cell Technology

Australian Ageing Agenda

The Lancet

Struggles

This has been quite a hard week, and it's only Thursday! I have noticed how Stargardt's is starting to affect me more at work, making me more focused on the problems I am having. I have found that I have made mistakes due to misreading things. In particular names and numbers. As I work in a hospital, everything revolves around a patient's number, and I find I have to look at something 2 or 3 times before I can figure out what it says (while entering it on the computer wrong and getting frustrated). This is even when I use my Zoomtext software. I guess I could make my font even larger, but I don't think I could accept that it needs to be bigger. I also get enough comments about how big my text is.

When I've come home, my eyes are so sore and tired that they feel constricted. I use my 'sore eyes' drops but they give me relief for about 20 minutes only. I feel like I need to soak my eyes in icy water because they are hot and irritated. I've come to realise that I need to seriously consider other careers that put less strain on my eyes. The hard question though is what can I do? I'm very much a perfectionist and need a challenging job that is different every day. I also love Working in health. It's a hard question but I seriously need to do some thinking.

A few needles for a cure?

I have come across websites, videos and posts about acupuncture being used to treat Stargardt's Disease and it's sister Retinitis Pigmentosa. From my understanding, centres offering acupuncture as a treatment use a form called micro acupuncture and microcurrent stimulation (that just sounds scary). The first thing I thought of was a whole bunch of long, skinny needles being poked into your eyes. Thankfully, this torture does not exist (yet). The microacupuncure component involves needles in the hands and feet, and the microcurrent stimulation involves electrodes being placed in precise areas around the eyes. It has been claimed that this treatment has improved the vision of Stargardt's patients.

There's also a series of videos on YouTube from a Turkish doctor claiming he has treated patients using this technique. I must admit I am very skeptical as I have a very scientific based head and always need evidence for how such a treatment can work. For me, it's fine to post a a huge declaration that some radical treatment is working to cure visual loss, but you need to tell me HOW!? Isn't that the basis of knowledge. This is the result, and this is how it was achieved.

I am going to find a practice here in Sydney that offers this treatment and give it a go and see if it works for me. I also plan to do more research. Maybe the answer is already here?!

Sore head

I've found that I have constant problems with migraines. It gets very painful right behind my eyes and can sometimes be so painful I feel quite nauseous. I had to leave work early the other day because I could not function.

I've put it down to a couple of things. The glare has been absolutely destroying my eyes, even when I'm indoors, making me feel like I need to be nocturnal to escape it. It literally makes me feel as though I can't see. Everything is way too bright to take in and I just want to close my eyes. Sunglasses would probably help but I can't bring myself to walk around the hospital I work in wearing my sunglasses. People would think I am strange or even rude! I was under the impression the glasses I have controlled glare, or maybe this summer sun through the clouds is just no match.

The computer screen has also been giving me grief, especially after having holidays and not having to stare at it all day. If it's too bright it hurts, if it's too dark I can't read it - you just can't win! I am looking into investing in an anti glare screen to use at work, shame I can't use is to control the weather!

Until then, I will cope with a nice dark room, my bed and some shut eye!

iPad Verdict

I know some of you have been eagerly awaiting the verdict on the iPad and I have been very slack over the past few weeks with updating you all.

I purchased the iPad 2 about a month ago now and I will say that it has been the most useful purchase I have made in a long time! I have not been able to put it down! I am constantly on it - playing games, checking emails, facebook or reading.

I was most excited to download books I've been waiting to read for some time now and that was the first thing I did. Using the iPad I have been able to read about a book a week. It is so easy and fabulous. I can make the font as large as I want and lie in bed with it and don't have to worry about lighting or how close it is to my face. Books download in less than a minute and I love that you can sample a book before you buy it.

I also use it to the newspaper. You can download an app (I downloaded the Sydney Morning Herald) and it updates every day. You can zoom in and read it in large font. I haven't been able to read the paper in years and now I can! You can also get magazines and cook books which is fantastic, as I find most recipe books have tiny font so I can take my iPad into the kitchen and read a recipe with ease.

I think the iPad is very beneficial for the vision impaired, although it is quite expensive and I don't think it can be subsidised as a visual aid. As mentioned previously I purchased mine for free on a plan with monthly data (which works out I pay the iPad off plus a little extra for the data usage) through Vodafone.

The iPad is definitely worth purchasing. It's capabilities are endless.

2012

HAPPY NEW YEAR EVERYONE!

May 2012 bring prosperity and peace to all, and most importantly, bring us closer to a cure for Stargart's Disease!