NGF Mentor: Shelley Viviani

Shelley Viviani
California
Adult with Gaucher
Email: shelley_viviani@sbcglobal.net

I was born in 1954 in New York to European Jewish parents. I was diagnosed with Gaucher Disease type 1 in 1973. My spleen was removed in 1974 due to enlargement. In the subsequent years I had an enlarged node (with GD) removed from my neck. I've had a history of back problems, hip problems, total hip replacement and revision and a decompressive laminectomy at L4-L5. I began on ERT in July 2001. My first hip surgery was October 2001.

I live in the San Francisco Bay area and have worked full time as a teacher for visually impaired and blind students since 1980. I also recently taught a class at San Francisco State University. I attend Gaucher Advocacy meetings in my region and once spoke on a panel, to share my basic history with GD.

I live with my husband in Redwood City, California. I have 3 sisters, none of whom have GD. My father died at age 67 from complications of a dementia like Parkinson Disease. My mother is 79 years old and has a Parkinsonian like dementia (Lewy Body). I love to travel and have an active life in between surgeries and physical ailments. I also have asthma, rheumatoid and osteo arthritis. And I am blessed with some of the most amazing doctors who have helped me find my way through the maze and obstacle course that is the life of a person (and their family) with Gaucher Disease.