NGF Mentor: Jeffrey Cohen

Jeffrey Cohen
New York
Adult with Gaucher
Email: jeffmcohen@gmail.com

I was born and raised in Great Neck, New York. I am a member of the University of Rochester class of 2010. In college, I completed majors in Health and Society and Biology. I am currently a medical student at Harvard Medical School.

In 1992, when I was four years old, my mom realized that I had a distended abdomen and bruises in odd places, like the middle of my back. She took me to my pediatrician, who immediately sent me for a battery of tests to confirm the preliminary diagnosis of ALL leukemia. I underwent a bone marrow aspiration, and fortunately did not have leukemia. However, Gaucher cells were identified in my bone marrow and I was referred to a hospital in New York City that had specialists in the treatment of Gaucher Disease. My diagnosis was confirmed, and a few months later, in the summer of 1992, I began Enzyme Replacement Therapy. I was initially treated with Ceredase, then Cerezyme®, and have been treated with VPRIV™ since October, 2009. Thanks to the superior care that I have received and support from my family and friends, I have been able to lead a very normal life.

In 2008, as a sophomore in college, I started the Gaucher Chat Program. This is an electronic pen-pal program for young adults with Gaucher Disease. Interested individuals contact me and I create pairs who communicate using e-mail. I also have the privilege of maintaining contact with each participant and I have learned how amazing young adults with Gaucher Disease really are. In conjunction with the Gaucher Chat Program, I also operate the Ask Jeff Program, which allows people to ask questions without consistent contact. I answer various questions about my personal experience with Gaucher Disease, and help people find resources to answer and medically-related questions they may have because I am not qualified to answer any medical questions.

I look forward to answering questions and offering support as a Gaucher Mentor. I am open about sharing my experiences and I hope that my story will serve as a source of courage and information for anyone whose life is affected by Gaucher Disease.