Saturday, November 29, 2008

Troubled Eyes in the Beholder

Howdy Comrades!

As your Dear Leader, I'm not accustomed to admitting weakness or imperfections, but I have a confession to make to the peeps today.  I am not invulnerable to physical and mental woes.  This is shocking, I know, and I hasten to reassure you that I have no intention to resign as leader of the local branch of the BPP.  My work product, however, has suffered, and I need your advice and assistance.

As some in the Central Committee know, my blindness results from a rare genetic anomaly called "head cone rod dystrophy."  As I age, the condition progresses in strange ways.  Most disturbing to me is that I experience what's known as a scintillating schetoma, a blind spot in my central field that resembles and explosion or the mirrored ball in a disco.  I see this troubling phenomenon even with my eyes closed, when I train under blind-folded or in a dark room.  It is quite vivid and disconcerting, and the only time I get a break from it is when I am asleep.  There is no cure, only experimental therapies available through clinical trials.  One approach is to alter the underlying genetic error causing the damage to my retina.  The other approach is to inject stem cells and growth factor directly into the damage regions.  The longer I wait to enroll in a clinical trial, the less likely it is that I can benefit from any treatment.

Both experimental treatments are considered risky by the National Institute of Health.  Both have had some positive results in certain patients and very little help for others.  What course should I take?  Should I forget about becoming a guinea pig and let nature take its course?  I need to enroll in at least one clinical trial no later than January 3rd 2009.  Has anyone an opinion?

I await your suggestions.

Regards,

Chairman Mal

Power to the Peeps!

1 Comments:

Blogger JC said...

The waiting is agony since it is documented that the sooner one participates in clinical trials, the more likely it is that positive results will occur. I pray for a treatment for RP.

9:00 AM  

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