Blindness for a Cure?

9 Jun

A cautiously optimistic opinion by Michael Perez

As a young man, many years ago, I remember pleading with my retina specialist to find a cure for my eye disease before I was too old to enjoy the good sight.  Doctors back then, as now, promised that we were within five to ten years of a major breakthrough and cure.  Well, after many years I continue to hear the same predictions.  While I know that there is much good work being done, I have come to a point of cautious speculations.

My cautious speculations developed after many years of participating on a message board and learning after the fact the damage caused by research trials.  I do not know the numbers of children who have participated in clinical trials to experience negative results.  The stories I have read are sad and often do not tell the extent of the damage.  I also feel that we have little knowledge of the numbers trials with negative outcomes.  With that said, I have supported the use of Dorzolamide for the treatment of congenital x-linked juvenile retinoschisis following initials by Doctor Fishman in Chicago.

My concerns are that parents may be “blind” to the RISKS of any type of experimental treatment.  Hope and the promise of a positive outcome crowd out all caution and critical thinking.  Focusing on the outcome may thwart a systematic evaluation of the procedure, possible outcomes and planning should there be a negative outcome.  It may be easy to hope so much for a positive outcome that one does not fully consider the risks of an adverse outcome.

Experimental treatments are just that, “EXPERIMENTAL” and when considering an experimental treatment a full evaluation needs to be considered.  There is no need to rush into an experimental treatment and full consideration should be given to the risks.  Also, thought should be given to planning should the worst case scenario happen.  Who is responsible to additional medical follow-up?  What about life changes should visual acuity significantly decrease?

Some time ago, I asked one of my eye doctors about an experimental procedure and I commented “How much worse can my vision get?” and he replied “Much worse.”

Speaking for myself, I still want a cure and talk with my doctor every visit.  However, because of the experience of others I have learned to fully consider all of the facts because in many cases, the results are not reversible.

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