Jay Rosenthal
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  • Garden City, New York
  • United States
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Jay Rosenthal's Discussions

CESD or not CESD?

Started this discussion. Last reply by Mary Pruitt Nov 11, 2012. 4 Replies

Hi everyone,Since April, I've been poked, prodded and passed from doctor to doctor like a game of hot potato in search of a diagnosis. Now, after being negative for HIV, Herpes, Infectious Diseases,…Continue

 

Jay Rosenthal's Page

Profile Information

What brings you to LAL Solace?
Support, Other
Do you or someone you know have a LAL Deficiciency Disease?
Yes
If yes, who is effected by LAL Deficiency?
Other

Comment Wall (1 comment)

At 8:18am on October 3, 2012, Brett B. said…

Hi Jay, welcome to website.  I went through a similar process in being diagnosed with CESD.  I was misdiagnosed with several other rare disorders before getting an accurate diagnosis from a pediatrician who specializes in genetics.  It has been about three years since I had received the news that I born with a rare genetic disorder that few knew a lot about. It is amazing the amount of research that has been done in the past three years about lysosomal acid lipase deficiency.  I am currently participating in a clinical trial that has had a tremendous impact on my life.  I would be happy to discuss in more detail the process that I went through in getting diagnosed with CESD and some of the very encouraging news that is out there for CESD. 

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