I was 19-and-a-half years old when I was diagnosed with NF. I had multiple birthmarks, or café-au-lait spots, from birth and I guess my doctors weren’t aware of neurofibromatosis. Around Easter, when I was in either 7th or 8th grade, I ended up in the ER due to dehydration and a high fever. I was diagnosed with pneumonia and had a chest x-ray. No one informed my parents of the results that further indicated many symptoms of NF, including rib deformity, scoliosis, and a “thickening in the left upper apex.”
When I was in high school, the left side of my neck was fuller than it had been, but even after four minor procedures to remove the growths, no biopsies were performed. My mom even talked to the surgeon who performed the procedures and questioned why there was such a significant difference. He answered that everybody’s left and right side are different. This was in 1985.
In late spring 1985, I went to my gynecologist due to the fact that my left breast appeared swollen and the left shoulder blade was even more pronounced. After a breast exam, blood draws, and a series of questions, he referred me to a general/vascular surgeon. After another minor procedure, this doctor actually sent it out for a biopsy and the results came back that I had neurofibromatosis.
The plexiform tumor that I have is inoperable, and even though it was debulked in 1987, it was the size of a pineapple pressing my left lung down. The tumor is in the left shoulder pushing the shoulder blade outward, pushing muscle and nerves, so when I sit “the wrong way” I have tingling in the arms and hands.
I don’t want to use NF as an excuse for anything, so whatever job I’ve ever had I put my all into it. I have been a babysitter, a cashier, data entry, waitress, preschool teacher, and a manufacturer in the semiconductor field. I am currently a caregiver for seniors, people living with Alzheimer’s and dementia, and disabled individuals so that they can remain in their homes. I have also worked with people who are in hospice. I enjoy helping others, and it is an honor to be there for families, especially for people who are near the end of life.
I know that there are others out there that are so much worse off than me. I feel that having NF is a challenge and I believe that for whatever reason I have NF, I know it is because God selected me.
Barbara's Story of NF also appeared in the Fall 2021 issue of NF News.
