NGF Mentor: Kevin R. Kline

Kevin R. Kline
New Jersey
Adult with Gaucher /Pioneer Program
Email: kevinrkline@yahoo.com

I was born in 1971 in New York City, and was diagnosed with Type One Gaucher Disease in 1976. I am the only one in my family with Gaucher, although my brother and sister are both carriers. Early on I spent months on end at NIH participating in many tests, studies, and protocols. Those years were fraught with many unknowns, concerns, and many sleepless nights for my parents and siblings.

Today, looking back on those years, one thing stands out. No matter how invasive and or generally frightening anything seemed, the Doctors, Nurses and Researchers at NIH always made the environment and their patients feel comfortable and safe. Of course that was not always easy to do. In those days everyone involved was learning on the fly, addressing issues as they came up, and easing patients and parents concerns when necessary. It is a credit to all involved for being able to create a feeling of trust, security and safety in such an unknown and trying time in the lives of everyone involved.

It is with that in mind that I decided to become a member of the National Gaucher Foundation Patient Mentor Program. Knowing the overwhelming sense of fear and uncertainty that goes along with the diagnosis of Gaucher’s Disease, and its management, and having been through this, myself as a child, a teen, and an adult, I have the unique ability to address the issues and concerns of anyone touched by the disease.