Stories of NF: Jillian D.

When I was 8 years old my mom and I noticed a bump on my head. When it didn't go away, we scheduled an appointment with the doctors. They told me that I must have hit my head because it looked like a goose egg. So, I went home and waited for it to go away.

A year later the bump was still there and it looked like it was getting bigger. We scheduled another doctor appointment and they told me the same thing. That it looked like a goose egg and that the fluid must not have absorbed back into my body.

Another year went by and the bump was still there. We scheduled another appointment and this time we asked for imaging on it. The doctors did a CT scan and they said that it was just fluid buildup and it just hadn't absorbed back into my body yet.

By the time I was 11 the bump was so big that when I put my hair in a pony tail the bump would bulge out of the side of my head. So, we went to the doctors again and this time I got an MRI. That is when the doctors told us that they had no idea what it was, and that they were sending us down to Primary Children's.

When we saw the doctor there he said that it looked like fatty tissue and it was going to be a quick in and out surgery to remove it. Little did they know that the “fatty tissue” was going to bleed so much that they could only remove a tiny piece of the tumor before they had to stitch me up. That is when they came out and told my mom that they thought that I had sarcoma. They sent the tumor to get biopsied. That is when the results came back as NF1. Later I was diagnosed with Mosaic NF1 because I do not have any of the normal “symptoms” of NF1.

Because I don't have normal NF 1, they do not know the chances of it mutating into a sarcoma. So, I have to keep an eye on my tumors and make sure that there is not a change in texture or pain. It impacts my plans for the future because I don't know if it will ever change into something else. The tumors are only on my head, under the scalp and above the skull, so they cause a lot of headaches and some of those headaches have made me pass out.

My mom is my biggest supporter. She is the one who pushed the doctors to do the imaging and do something about the bump that was on my head. She stayed with me on the couch for a week after my surgeries to make sure that I was okay.

I have many scars on my head and sometimes I get asked questions about them. I always take a second to tell them about what NF is. I went 3 years without a diagnosis because not a lot of people know what NF is, so I try to spread awareness as much as I can. I am not ashamed of my scars and I would rather somebody ask me about them then to just stare at me. That has made me stronger, not caring if people stare because I know that my scars aren't ugly, they are part of me, and I am beautiful.

I am working as a server/shift lead at one of my favorite restaurants. I have five sisters and one brother at my dad’s house, and one sister and two brothers at my mom’s house. They all make me laugh when I am down, and they have all helped me through all of my surgeries. Going on walks with my family or even by myself makes me happy. I can hear all the noises that the animals make and see all the beautiful colors that are in nature. It is very peaceful and makes me very happy.