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Indianapolis, IN


My story of skin cancer started with a gene inherited from my mom.  Over the years, watching her difficult journey with skin cancer, its metastases and later, the discovery of this gene started to impact who I was and where I would go. With every turn, I was not completely sure of what would happen or the end result.

Early in college I changed my major to nursing but things hadn’t really sunk in yet about the disease process in my life; I was more interested in graduating with decent grades and getting the job I wanted.  I had a rude awakening to this disease 6 weeks before graduation and found myself hospitalized after serious surgery.  After a reassuring phone call from the dean that I would still graduate, I set out on a quest to always find the best doctors I could who knew at least something about this rare, odd and frustrating disease.  The future held more surgeries, some big and some not.  My mother dealt with a lot of guilt but we laughed about being so “unique” compared to the rest of the world.  We (mostly me) felt like a freak of nature because I didn’t know another soul with this malady.

My “freak of nature” feelings ended wonderfully when my wonderful supportive husband happened to see information about a support group for this disease (known as Basal Cell Carcinoma Nevus Syndrome; aka Gorlin Syndrome).  We have since met with sweet souls who deal with what I deal with. We discuss doctors and ideas.  Our motto is that we have this disease but it doesn’t have us!  Some time ago I found out that my son has the gene and consequently the disease. 

I still have a ways to go but I know my family, friends and support group will be there for me.