NGF Mentor: Linda Rubenstein

Linda Rubenstein
Massachusetts
Adult with Gaucher/ advocate/ speaker
Email: rubensteinlinda@comcast.net

I was born and raised in the Boston area. I graduated from University of Hawaii with a degree in Marketing, Psychology and Communication. In 1990 at my annual check-up my doctor noticed my platelets were low and my spleen was enlarged. After a year of very "scary" tests and platelets dropping even more and my liver and spleen were 5x their normal size, I was anemic, would bruise easy and seemed to be getting sicker. My Primary Care Physician not knowing what I had finally sent me to a Hematologist/Oncologist who fortunately specialized in Gaucher Disease. After a bone marrow test I finally I was diagnosed in 1991 with Gaucher Disease and immediately started ERT. My bones were just showing signs of the disease when the ERT stopped further bone problems. My platelets finally started to go up, I was no longer anemic and year after year my liver and spleen finally returned to its normal size. When I became pregnant I participated in a study since I was one of the first woman pregnant and on ERT. I went off ERT for 3 months and my platelets started crashing down very quickly. I started back on ERT in my fourth month and my platelets stabilized and I gave birth to a healthy boy.
I am an Adult living with Gaucher Disease and feel very fortunate to have a "miracle" drug that allows me to live a normal healthy life.

I am a Gaucher Advocate and speaker. For the past 14 years I have been the President of the Boston Chapter for the NGF and have organized yearly meetings. I have done TV interviews while at the Biotech Conferences. I have done Newspaper interviews for my local papers. I have been on the CityLine TV show and was in the original video that Genzyme put together when their new facility in Allston opened which explained about Gaucher disease for the visitors to watch. I have spoken at numerous conferences and seminars for doctors, healthcare professionals, grad students and students attending colleges. I participated in the Expression of Hope and spoke at the opening of the tour at the Genzyme facility for doctors and scientists all over the world. I attended the Biotech conference and spoke with various attendees about the Expression of Hope.

I have been available over the past 16 years to speak to other Gaucher Patients or families regarding pregnancy on ERT, children with Gaucher and have listened, helped and put Gaucher people in touch with each for their specific needs. I am available anytime to speak with anyone. I have a lot of empathy and understanding and am always willing to listen.