Wednesday, November 24, 2010

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!)

Monday, November 22, 2010

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.