Monday, December 27, 2010

Season's Greetings!

Merry Christmas and Happy Holidays to everyone!

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

Thursday, December 23, 2010

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:
Sweet Potato

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:
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.

Saturday, December 18, 2010

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?

Sunday, December 12, 2010

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?

Friday, December 10, 2010

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!

Wednesday, December 8, 2010

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!