Season's Greetings!

Merry Christmas and Happy Holidays to everyone!

Let's hope 2011 brings us closer to a treatment for Stargardt's Disease!

Diet - To eat those carrots or to not?

When I was first diagnosed last year, the only thing I was told was to steer clear of any excess Vitamin A in my diet - so no supplements containing Vitamin A. I then asked, "What about foods with Vitamin A?" and my doctor told me that I can't totally exclude foods with Vitamin A in my diet although I can try to limit and not eat excess of foods high in the vitamin, including carrots, which I happen to love and constantly eat!

I decided to look up what foods are rich in Vitamin A so I can try to limit my consumption of them, hoping this would contribute in some way to maintaining my vision. Foods that are rich in Vitamin A include:
Carrots
Liver
Broccoli
Sweet Potato
Butter
Spinach

Most of these foods I enjoy eating (with exception of liver.. gross) and are foods I will usually pick over other foods!

I was also told to take Lutein supplements, which I did at first, though I found they made me quite nauseous and upset my gastro system (if you catch my drift!). So I scrapped them and looked for Lutein rich foods. Such foods include:
Kale
Spinach
Peas
Zucchini
Bruessel Sprouts
and any other leafy green vegies

Interestingly, spinach is on both lists so how do you eat just what you want and not what you've been told to avoid? Some days I find I avoid eating carrots and other Vitamin A rich foods, but sometimes I just can't help myself.

Thus the only real advice I received at the time of my diagnosis, I can't really use. I still eat carrots sometimes, and try to eat spinach and other leafy vegies and at this stage this is all I can do.

It was also suggested by friends and my optometrist to follow a macular degeneration diet, although the benefits of sticking to such diet has not been proven for Stargardt's.

I guess all we can do is eat healthily and hope for more knowledge on this area.

Ethics and Embryonic Stem Cells - Opinions??

I've been doing a bit of research on the treatment that Advanced Cell Technology is beginning to trial to treat Stargardt's and came across an anti-cloning and embryonic stem cell research blog. This is put together by Australian doctors and scientists. There is a specific post relating to the ACT trial. The post states that ACT are really in it for the fame of discovering something "new" and that it will likely cause immuno-suppression to the treated patients. It also states that such embryonic stem cells can't ever be injected into a patent's eye, and the trial being conducted by ACT is actually to see what harm using such cells may have on people.

Naturally I was angry to read this as when I discovered that ACT was conducting an actual human trial I was ecstatic and was given hope that I would definitely one day regain some of my vision. So this lead me to research what this post has said and find out more about the ethics surrounding embryonic stem cells, as I am all for ethical research and treatment and reading these statements did make me feel somewhat uncomfortable with the whole idea of have such cells put into my eyes. This is what info I found:

1. Embryonic stem cells come from 5-6 day old human embryos. Embryos in humans are a fertilized egg of up to 8 weeks. To me, the though of using these cells made me uncomfortable, although when I researched further and found out that they were only 5-6 days old, merely a bundle of cells, my feelings somewhat eased. I'm not entirely sure where the embryos for the ACT trial are from, but I will try to find out. The following website is from the Australian Government about Biotechnology and has some useful information about stem cells:

Biotechnology Online - Stem Cells - Australian Government


2.Induced pluripotent stem cells (IPS) are another type of stem cells the post states that could be used instead of embryonic stem cells, as they do not have the ethical issues associated with embryonic stem cells as IPS cells are derived from the person's own body, reducing the risk of rejection of foreign cells and also immunosuppression to the person receiving the cells. This type of stem cell was first produced in 2006, making it quite new so obviously there still needs to be a lot of research on the impact of such cells. There is the thought that the use of such cells may impact caner causing genes, making them "turn on" and cause problems, although a study found a way to stop this from happening. I'd like to find out more on these IPS cells and see why such cells can't be used in place of embryonic stem cells.

I hope this information has been useful! I am a strong believer in ethics and I like to know everything about everything, which is why I felt the impulse to find out more about stem cells and the different types that could potentially help us  with Stargardt's. What are your thoughts?

My best friend - my glasses!

I realised today I don't leave the house without my glasses. This surprises me because I hate the way they make me look! This makes me think back to the long process I went through to get my glasses in the first place.

At the time of my diagnosis, my opthamologist told me that glasses would not help at all, and I went on my way, very disappointed. I then went to another optometrist to see if they could do anything. When I tried all the different lenses I was convinced one of them helped me see the letters. Yet the optometrist told me there was nothing he could do, leaving me  to feel helpless and disheartened.

I persisted, and found an optometrist ac cross from where I worked. He was fabulous. He prescribed me glasses that help me to see long distances. What people don't understand is that just because I wear glasses or contacts, doesn't mean my blind spot is fixed. It helps to make my vision sharper and more clear, and this makes a huge difference from the fuzzy distance I see normally.

To top it off, a relative of mine went back to the original optometrist, informing him I had gotten glasses and they helped me a great deal, and the optometrist said it was probably all "psychological"!!!!!!!!!!!!!

Has anybody else had any experiences like I have?

Treatment on the horizon!!

In November 2010, Advanced Stem Cell Technology in Massachusetts was approved to conduct a human study in patent's with Stargardt's!! What fabulous news!!

From my research, they will be using embryonic stem cells, which are stem cells from embryos from a fertilized egg in vitro - so these eggs are fertilized in a lab and not in a woman's body.

The following website is an article outlining the study:

US starts human blindness trial using stem cells

Let's keep our fingers crossed and hope all goes well in this trial. Hopefully in the near future we will all be able to be treated!

For all the Aussies - Inherited Retinal Diseases Study!

I've recently become involved with a department as part of Sir Charles Gairdner Hospital in Western Australia and their Inherited Retinal Diseases Register and DNA bank. The aim of this organisation is to be able to study the mutations to the gene that is causing Stargardt's. So I decided I would consider donating my DNA so hopefully somebody can find a treatment!

I'm still yet to consider the ethics and legality of this, and my main concern was who would have access to my DNA - I definately don't want insurance companies or the police accessing my very, VERY personal information I don't even know about myself! Once I recieve the kit and read through the organization's information I can make my judgement but it is definately looking promising!

If anybody else want sto participate here are the contact details for the department responsible:

Department of Medical Technology & Physics
Inherited Retinal Disease Register & DNA Bank
Sir Charles Gairdner Hospital
Nedlands, WA 6009
Ph: (08) 93462408

I have been informaed that so far there are only 115 people in Australia registered on the database who have Stargardt's! This makes me feel kind of special and unique!

Stem Cell Treatment - Proven or Unproven?

So I came across information about stem cell treatment for Stargardt's currently being performed in Germany. I was over the moon to find this out, very keen to find out more and how I can organise to get this done to restore my sight. I had a look at the company's website - The Xcell Center - to see how the procedure was carried out, the risks and the costs. It all seemed so promising! The company also stated they treat many other conditions from Alzheimer's to Autism. You can check out their website here:

Xcell Center

I thought it wise to further research the treatment the centre offered, and question why it would not be used in my own country, Australia, if it was a proven treatment. I also thought that perhaps I could find someone in Australia to perform the treatment so that I wouldn't have to travel to the other side of the world (even though it would be a great excuse for a holiday!).

I made contact with the Australian Stem Cell Centre (ASSC) to find out more about stem cell treatment within Australia and also the reputation of the Xcell Center. I found this organisation extremely helpful and they gave me a very in depth response to my query which was fantastic. They also pointed me in the direction of some other organisations which may have more information.

The main concern that I found was the reputation of the Xcell Center. It seemed that the treatment offered had not been clinically proven and did not have extensive research to back up its results, which I found a little scary. I was also told by ASSC that the particular type of stem cells used by the Xcell Center can only turn into fat, bone or cartilage cells as per the current research. I was also made aware of legal issues surrounding the centre, arising from the fact that the area of stem cell treatment had not previously been regulated.

Below is a couple of articles about the Xcell Center. I think it is important that we can access all the information that is out there regarding new treatments for our condition, so we can make personal judgements and decisions for ourselves. I hope this has been informative for you all and let me know what you think!!

Stop Life Threatening Stem Cell Treatment

The Hope Business   (I find this article very interesting!)

Hi All

Hello everyone!

I've begun a blog to help gather all the information around about Stargardt's Disease (aka Fundus Flavimaculatus) and to gather support amongst others who have also been diagnosed with the condition.

A little background about myself: I am 24 years old, living in Sydney Australia, and was diagnosed with Stargardt's at the end of 2009 (awesome Christmas present!). It was suspected that I had had the condition for some years, yet it went undiagnosed. It came as a great shock to me, especially since my mum and I had spent weeks googling possible conditions that I may have after it wasn't an easy "prescribe some glasses and you'll be right" case. We had come across Stargardt's in our research but instantly dismissed it, probably due to the fact it had no treatment and we didn't want to think of it as a possibility. But after many tests, dilated pupils and several electrodes being placed in my eyes, a conclusion was finally drawn. I was then sent on my way to deal with it and pray for someone somewhere to do something about it as nobody else could.

I am to find out as much information as possible about research, treatments and support, and would love to hear everybody else's stories.