What would you do for a cure to Stargardt's?

We're seeing clinical trials happening slowly and hopefully in another 5 to 10 years, we may see gene therapies or stem cell therapies  available for the general market.

In my search for a cure, I'm faced with the question of how much do I want it?

Being in my thirties, my life is consumed by work, family, friends, and self development and maintenance.  Time has become a precious commodity where it's already a struggle to balance life.  In this search, I've come across "therapies" that can slightly improve or help slow down the degradation process of Stargardt's.  However, many of these treatments require extensive investments in time and a committed persistence as a lifestyle.  Perhaps the true reality is that any potential improvements require lifelong commitments and will likely falter when one breaks routine.

For example, Chinese Medicine (depending on their practitioner's skill) can offer remedies or qigong which can help to improve the condition of your eye.  The cost however, can be hours in a consistent manner with sseemingly hopelessness and minimum progress.  The question becomes, is it better to spend hours to try to maintain or simply let it be and accept this condition.

Not knowing how much things can change,  Is it worth investing the time and energy? Perhaps in my younger days, I may be inclined to do so but as time become more and more scarce, I find myself unwilling to invest hours to hopefully better my eyes. 

For those of you that ARE willing to try and searching.  Start with doing some qigong.  It will help flush out some of the toxins that  a stargardt's patient's eyes are unable to process.  The ability to bring more blood and ciruclation will also help keep your eyes in better shape.  Does it mean that it would only work if you invest hours a day, no...  10 min is still 10 minutes in the bank.  But for you to see the effects in a more significant level, the time is required.  So even if you can't do hours, even just 15 min a day will go a long with if it's incorporated into your lifestyle. 

There are times I get frustrated when I see people taking for granted their health.  In my life, I seem to be continuously troubled by health condition where it requires a significant effort just to upkeep (not even to improve.  Life isn't fair and I'm constantly reminded to accept that. 

Accupuncture for Stargardt's?

Since last September, I've been in Asia receiving accunpuncture treatments. Although there has been some setbacks inbetween, I've had close to half a year's worth of weekly treatments.

Why Accupuncture? I have a friend with some eye condition who has indicated this particular doctor specializes in accupuncture for eyes, often helping to stimulate nerves and has had some results in lowering perscription. Although the thought of having needles in my head and around my eyes is difficult to digest, but I figured it might be the only way to help reduce my growing perscription.

The Treament Process. Weekly sessions with each session totalling about 14 needles in both the top of the head and around the eyes. Accupuncture is based on Chinese Medicine's philosophy of stimulating specific spots which is related to a certain body part. The idea is to increase blood flow to that area and allow the body to recover or rejuvanate itself.

My Thoughts. The accupuncture sessions has been trully energy consuming both in body and spirit. The physical pain of having needles in your head is tolerable but still fairly evident. Especially when it comes down to the four needles cloest to your eyes. It feels like the needles were placed deep within the muscles around the eyes and at time s I was afraid if I move my eyes too much it might go into the eye (I think that was more fear than reality) After the needles were inserted, you wait about half hour before taking them out. The physical pain comes from the skin because the skin on your face tends to be more soft and sensitive. In addition, the tiniest movement in your muscles sends sharp pain in the muscle. On days where i have sniffles and allergies, the throbbing pain becomes even more evident. (felt as if i was having trouble getting oxygen to my head) After each session, there is always an unexplanable tiredness that follows, rest and drinking lots of water is recommended.

The mental state of mind was evne more overwhelming than the physical pain of these accupuncture sessions. The hope of improved vision, the sight of other young children being brought by their parents. The unfairness of this world and the desperation of having Stargardt's Disease. Being in that bed is a constant reminder of my condition.

My Results. The only thing I really felt was after each session, my eyes seems to be clearer when looking farther, things seem brighter. But my perscription still remain the same.

I don't relaly know what to think. At this moment I've decided to halt the treatments because I feel it is not worth the pain. Although the real struggle comes when there's is a undying thought that tells you "perhaps you didn't try hard enough or long enough to see a difference" There are some patients there who has received treaments for years, yet I'm not sure what the real results are. But what I've concluded is, if I can't believe that it's going to make a difference, then it would be even harder for the treatments to have real impact.

The pain that accupuncture brings is more than just a physical nature. It brings out hte darkest side of the disease and no matter how much I tell myself, I still feel a mix of anger and sadness.

Maybe one day there might be a cure. But until then I see accupuncture as a way to relieve tension but not as a solution to eye conditions.

The Race for a Cure for Stargardt's

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

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.