Born with NF tumor diagnosed at age three, there was little to no information about NF in the early 1970’s so diagnosis at John’s Hopkins Hospital took a while due to limited resources and data available at that time.
As a child going to school with a facial deformity there was no hiding my scars or that I looked different. It was at about age five when adults began reacting to me differently and elementary school became challenging with a lot of bullying. I’ve never known a life without adversity, surgery or pain. By the time I got to middle school I realized that this was my life and although no one understood it, it was the hand I was dealt and I must begin explaining to people the best I could about the tumors. Although always being social, I accredit my mother for mainstreaming my education, I was into ballet, basketball, swimming, skating you name it, by nature a very outgoing child. My mother did not shelter me which was the best decision to build my resiliency and self confidence. Growing up having surgery after surgery the last place I ever wanted to be was in a hospital but by the age of 20 I had begun practicing emergency medicine and later became a Trauma Nurse. My future now at age 53 is to share my blueprint for self esteem, happiness in adversity from both sides of the stethoscope as a lifelong patient with NF1 and all my medical knowledge to help children and families live their best lives.
In 1990 I had become an EMT in a trauma center and was volunteering on a neuro unit in the hospital when a group of administrators pulled me aside and told me I was being moved to the basement at night to file papers and to give up plans on becoming a nurse because my face would frighten patients. There had not been an incident and I was excelling in all areas of my work life. I was devastated as I believed of all places in the world that I would be accepted and able to serve humanity and give excellent care to people would be in a hospital. My mother educated me that night on the Americans With Disability Act and I confronted a team of administrators 30 years my senior with the information I had learned about and fought to be judged on my qualifications and work performance. I went on to a successful career in medicine becoming an RN and my experiences as a patient enormously contributed to the care I gave to my patients. None of my patients were ever scared of me, the opposite was true as they embraced my empathy for their pain and trusted me with their care. Now my platform is to share all I know of medicine and living with NF to advocate for the NF community speaking at NF Conferences on Patient Experience, appearing in the media and sharing my story at schools to build more confident and compassionate children.
I am a speaker, a writer, an RN. Joyfully married to the love of my life whom I get to travel to new destinations with. Yoga is a daily practice and I can be found often on my paddle board, the beach or roller skating. Happiness is a daily practice!
Clinical Trial(s)
Currently undergoing testing at Moffitt Cancer Center NF Clinic in Tampa, FL. for clinical trial. Moffitt is incredible!
Favorite Song
Candy Girl by New Addition
Dream Superpower
Invisible cloak, sometimes dealing with stares and questions from the public is exhausting.
Favorite Food
Crabs, Maryland Girl!
Fun Fact
I faint when I get my blood drawn, very embarrassing for a super hero!
