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Dr. Wayne Rosenfield's story

Oct. 30, 2006: In gaucherdisease@yahoogroups.com, "Wayne D. Rosenfield, Ph.D." <drwayne@...> wrote:

I attended the genetics conference yesterday at the Jewish Community Center of Greater Boston. I was the Gaucher representative for a 5-person discussion panel at the end of the day. I spoke second, which was a good thing, considering what the other people had to say. My chronology of serious Gaucher-related problems ends abruptly in 1993 when I began ERT. My story seems positively joyous compared to people who have placed a child in a nursing home, are doing tube feedings for their children at home, or have watched their babies deteriorate and die. Out of sight from the audience, the Mom representing Tay-Sachs had a photograph on the table in front of her of her beautiful baby girl. She said that, when her husband returned from the bedside of their niece at the time of her death, he brought her the news that the death part of the disease is not so bad, and "It will be alright."

I'm sharing this with you because I feel a little guilty that the Gaucher story I related was so upbeat. My own Gaucher experience just gets worse and worse, until suddenly the bad things stop. There are so many other disorders that are causing people to suffer right now.

I think we can take some pride in pioneering the first of these disorders to have effective treatments.

Wayne D. Rosenfield, Ph.D.
Voicemail/Fax: 206-984-3642
Email: drwayne@snet.net