Over the past few years, we've been hearing numerous news release regarding the new research and clinical trials being approved by FDA. The two most promising treatments are being headed by two companies, one located in the US and the other in the UK.
The US company (Advanced Cell Technology) is a biotech company that is experimenting with Stem Cell Therapy that has been recently approved by the FDA for clinical trials. The therapy is said to replace damaged RPE cells with healthy cells which are intended to grow into healthy photo receptors.
To learn more about stem cell therapy for Stargardt's patients, view the link below
LVATUG Blog
Tuesday, January 18, 2011
Tuesday, January 11, 2011
Accupuncture
Back in September, I came back to Asia in search of a possible treatment -- Accupuncture. They say that there is a possibility for improvement, and that it has helped individual cases in restoring some vision.
I figured there's no harm trying, (besides money and time and pain) So I decided to go to Asia to find this particular accupuncture doctor.
How does it work?
needles are placed at specific points to help stimulate your body to recover by itself. In the case of the eyes, there has been a number of cases where continuous treatments has proven to improve near sighted neess and other eye conditions such as lowering eye pressure.
My Experience
It's been three months of weekly visit. Everytime, the doctor would put 12 needles around my eyes and at various places on my head. You're probably wondering: Does it hurt? Of course it hurts! It feels like the needles help stimulate blood flow and there's a point where it reaches that it almost sting It's not a sharp pain thought, but a very settle pain that you feel.
It seem like everytime I leave after a session, I can feel taht things become slightly clearer. However, this effect does not last, usually by the end of the day, it is gone.
My Result so far
I came back for these accupuncture treatment to see if it can help lower my perscriptiong (did not really hope for much in terms of curing Stargardt's) After three months I went to do a check up to compare my perscriptiong, it turns out that my nearsightedness has gone down while my stigmatism seems to have gone up slightly. It is still inefficient information to really judge if this can have a positive impact on my eyes.
After Thoughts
It's a mixed feeling I go through whenever I'm waiting for the needles. Sometimes, I keep asking myself why do I need to go through this suffering. Why is it I must endure such pain. It's upsetting emotionally not because it hurts, but it remind meof how unfair life can be.
The only advice I cna say is, I'm lucky to have someone by my side to support me through this. Sometimes, support of your loved ones help make these things livable.
I figured there's no harm trying, (besides money and time and pain) So I decided to go to Asia to find this particular accupuncture doctor.
How does it work?
needles are placed at specific points to help stimulate your body to recover by itself. In the case of the eyes, there has been a number of cases where continuous treatments has proven to improve near sighted neess and other eye conditions such as lowering eye pressure.
My Experience
It's been three months of weekly visit. Everytime, the doctor would put 12 needles around my eyes and at various places on my head. You're probably wondering: Does it hurt? Of course it hurts! It feels like the needles help stimulate blood flow and there's a point where it reaches that it almost sting It's not a sharp pain thought, but a very settle pain that you feel.
It seem like everytime I leave after a session, I can feel taht things become slightly clearer. However, this effect does not last, usually by the end of the day, it is gone.
My Result so far
I came back for these accupuncture treatment to see if it can help lower my perscriptiong (did not really hope for much in terms of curing Stargardt's) After three months I went to do a check up to compare my perscriptiong, it turns out that my nearsightedness has gone down while my stigmatism seems to have gone up slightly. It is still inefficient information to really judge if this can have a positive impact on my eyes.
After Thoughts
It's a mixed feeling I go through whenever I'm waiting for the needles. Sometimes, I keep asking myself why do I need to go through this suffering. Why is it I must endure such pain. It's upsetting emotionally not because it hurts, but it remind meof how unfair life can be.
The only advice I cna say is, I'm lucky to have someone by my side to support me through this. Sometimes, support of your loved ones help make these things livable.
Monday, January 10, 2011
Pursue Your Dream
One of the lessons I've had to learn over the past decade was that don't let your eyes stop you from doing what you want to do. A decade ago, I chose not to pursue computers on the basis that I shouldn't stare at a computer all day long. A decade later, my job, although not a programmer, consist of me working on a computer. It's ironic in the sense that because of Stargardt's I decided I should not pursue computers, yet I still can't get away from it.
I've always regreted the fact I didn't study computers as my university major, a decade later, I've finally picked it back up and went back into taking some course to get myself reaquainted with it. It took me 10 years to finally get back to doing what I love. And the surprising thing is, I've never been happier.
So my advice is, don't stop when people say you shouldn't, because in my experience, its alot easier doing what you love then to have to do something that you don't like. With technology these days, nothing will stop youfrom accomplishing our dream.
If you're a parent, encourage your child in doing what they love. Don't let fear get in your way and stop them from doing waht they love.
I've always regreted the fact I didn't study computers as my university major, a decade later, I've finally picked it back up and went back into taking some course to get myself reaquainted with it. It took me 10 years to finally get back to doing what I love. And the surprising thing is, I've never been happier.
So my advice is, don't stop when people say you shouldn't, because in my experience, its alot easier doing what you love then to have to do something that you don't like. With technology these days, nothing will stop youfrom accomplishing our dream.
If you're a parent, encourage your child in doing what they love. Don't let fear get in your way and stop them from doing waht they love.
Wednesday, August 4, 2010
After a year of soul searching
It's been almost a year since my last post. Work has taken up much of my life and I've been doing some soul searchingover this past year.
It's almost 20 years since I was first diagnosed with Stargardts's. It's been quite the journey learning to cope and live with such a handicap. Overcoming physical and mental challenges and learning to live life from day to day. Its never easy but it is still bearable.
During the past year, I've been exploring matters of the mind, looking for a way to come to terms with this disability. Not that I haven't been looking in the past, but more so turning to new thoughts. Figuring out what I want, and searching for happiness.
Normality is a luxury that comes with a price.
As a person with a disability, there's nothing I wouldn't want more to just be normal. To drive a car, to read a map, to see the faces for passers by, to read a menu at a restaurant, to read a book on the train, all o which comes at a great price to a person like me. Somethings, with aids, you are able to overcome, but overcoming is still far from being normal. What you do not realize is how much effort it takes to simply be normal.
Happiness i all around you, simply need to take pleasure in life's small moments.
There will always be great people doing great things regardless of their circumstances or handicaps. But for the rest of us average folks, looking for happiness in small things will make your life a lot more livable. Being blind doesn't mean you cannot enjoy life, it simply means you will need to learn to enjoy it in a different way than most. Taking pride in little moments and tasks and stop trying to compare to everyone else. It may sound silly, but take pride in life's simple tasks; cooking, singing, running, because there are always someone who wish they can be you.
Take nothing for granted.
Whether its a helping hand from a stranger, the unconditional love of a parent, or anthing else in life, we are lucky to have the support and love from all those that touch us. Make no mistake, we are blessedby these peopleand always remember to keep it close to heart.
Understand and embrace life, only then will you find true happness and salvation.
It's almost 20 years since I was first diagnosed with Stargardts's. It's been quite the journey learning to cope and live with such a handicap. Overcoming physical and mental challenges and learning to live life from day to day. Its never easy but it is still bearable.
During the past year, I've been exploring matters of the mind, looking for a way to come to terms with this disability. Not that I haven't been looking in the past, but more so turning to new thoughts. Figuring out what I want, and searching for happiness.
Normality is a luxury that comes with a price.
As a person with a disability, there's nothing I wouldn't want more to just be normal. To drive a car, to read a map, to see the faces for passers by, to read a menu at a restaurant, to read a book on the train, all o which comes at a great price to a person like me. Somethings, with aids, you are able to overcome, but overcoming is still far from being normal. What you do not realize is how much effort it takes to simply be normal.
Happiness i all around you, simply need to take pleasure in life's small moments.
There will always be great people doing great things regardless of their circumstances or handicaps. But for the rest of us average folks, looking for happiness in small things will make your life a lot more livable. Being blind doesn't mean you cannot enjoy life, it simply means you will need to learn to enjoy it in a different way than most. Taking pride in little moments and tasks and stop trying to compare to everyone else. It may sound silly, but take pride in life's simple tasks; cooking, singing, running, because there are always someone who wish they can be you.
Take nothing for granted.
Whether its a helping hand from a stranger, the unconditional love of a parent, or anthing else in life, we are lucky to have the support and love from all those that touch us. Make no mistake, we are blessedby these peopleand always remember to keep it close to heart.
Understand and embrace life, only then will you find true happness and salvation.
Wednesday, April 1, 2009
Looking for a friend
Recently I came into contact with a teacher who has a 9 years old student struggling with Stargardt`s. I know there are some parents who read my blog and may have children who areliving with Stargardt`s around the same age.
We are looking for someone around the same age to connect over email and become an ePal with this boy. Perhaps share some struggles with each other and beable to relate to one another.
It`s tough dealing with this disease, but technology today has helped to broaden circles and close gaps, hopefully it would be easier going through the acceptance of Stargardt`s or any disease when you are able to share with someone in a similarsituation.
Once again, Request for ePal for a 9 years old boy with Stargardt`s
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