Hi! I was diagnosed with NF 1 when I was two months old. I have some learning disabilities, but take most of my classes in an inclusive environment and have made the Honor Roll several times. I love to read books, especially about science, horses and other animals, and have a collection of several different types of horse models. I love to bead jewelry, ride horses, play basketball, and spend time with my dog, Stoney. I recently attended Camp New Friends and had a blast! I like meeting new people and helping others.

I was diagnosed with Neurofibromatosis Type 1 when I was two years old by my pediatrician.  When I was 2.5 years old, I had surgery to remove a tumor that was growing around my optic nerve.  The tumor was making my right eye protrude from the eye socket.  For this surgery, they shaved my hair from about where my ears are to my forehead.  They cut my scalp from ear to ear so that they could peel the skin down the front of my face.  This surgery left me permanently blind in my right eye, as the tumor was wrapped so tightly around my optic nerve.  I have been told if we waited longer to have the surgery, I might have lost sight in both of my eyes.

Growing up, I was super sensitive to the way I looked.  The hospital is a "friend of mine" so to speak.  I have had six major reconstructive surgeries to correct the right side of my face and make it more symmetrical to the left side.  Five of the major surgeries took place between the end of my third grade year and the end of my eighth grade year.  In the year 2001, at age 26, I had the sixth major reconstructive surgery to further correct the size and opening of my eyelid.  After this last surgery I had three minor eyelid surgeries to help lift the lid to make it look like the left eye. 

Growing up was quite hard for me.  I was teased, laughed at, and made fun of through early adulthood.  My looks were constantly on my mind and I was never happy.  My self-esteem and self-concept stemmed from how I was treated in elementary school.  Still today, regardless of what I look like, I still see the young girl, who had an asymmetric face and eyes that did not look the same.  I am still trying to work on recovering from "being different" and seeing the woman whose reflection looks back at me each and every morning.   

I am a beautiful woman, who is presently a social worker who enjoys working with children and families.  I am also a budding professional photographer.   I enjoy dancing, cooking, reading, listening to music (local bands), college football, and outdoor activities.  My dreams are just like everyone else's might be.  I want to get married, have children and get old with my husband.  

It is hard not to be reminded of this disease as new tumors grow on my arms, stomach and face.  Neurofibromatosis is a part of me, as much as I am a part of it.  It has made me who I am today, the good and the bad.  I am working hard so it no longer "is my life,"  so that it no longer takes me away from my dreams.  It is scary and I hope one day they can find out more about it, if not for me, for my children, or their children.  But until then, I know I can be beautiful and loveable despite the way NF makes me look or feel.

LIVING with neurofibromatosis (NF) has been a challenge for me due to the fact that waking every morning, I am constantly aware of the visual and physical aspects of it. I have tumors that cover my entire body which is not pleasing, and it is still taking time to overcome. But with positive thought and prayer, I arise each morning to tackle the day as I will throughout my entire life.

Having NF makes me a reserved person, not wanting to approach situations. However, NF does make me stand out in a crowd. I don’t go swimming in public places, for example.

With the knowledge of the support group and working with Neurofibromatosis, Inc.-Mid-Atlantic for many years, I have been able to mentally keep on an even keel and have a positive outlook on life. For 20 years I have served on the organization’s Board of Directors. I have made talks to medical students, visited offices on Capitol Hill, appeared on television, and participated in fundraisers.

My family and friends have also aided in my support and encouragement. My mother, who also has NF, has been my strongest ally. Not being physically disabled by NF, I have learned to just go on and to be a productive citizen helping others whenever I can.