Thursday, January 26, 2012

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


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.

Monday, January 16, 2012

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?!

Sunday, January 8, 2012

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!

Sunday, January 1, 2012

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.



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