Arlene was diagnosed with NF1 at six years old, after her grandmother noticed a lump on her elbow. At the time, she remembers little information about NF or resources available to her family. As she grew older, more tumors appeared-including on her face-and she began to understand other ways NF had shaped her life, from challenges in school to ongoing medical care.

The NF landscape has changed significantly since Arlene was a child, with greater understanding of the condition, more specialized care and new treatments available for some manifestations of NF1. But progress also means addressing the full experience of living with NF across a lifetime-including education, relationships, family planning and the choices people make about their futures.

Growing Up with NF1

I was 6 years old when I was diagnosed with NF1. My grandma found a lump on my elbow, and when the doctor did a biopsy, it was determined that I had NF1.

I was too young to understand what NF was, and I don't remember what other information the doctor told my parents. At that time, I don't think a lot of doctors knew what NF was, and I don't remember if we had been told about any resources out there.

When I was in high school, I got my first surgery to remove some of the lumps. After that, I noticed that more of the tumors kept growing. As I got older, I got more and more on my body and even on my face.

I have to see several specialists every year and go through different tests, including MRIs and mammograms .

Working Harder

I had trouble in school. I never had the best grades, but at that time, I didn't know I was able to get help at school or that my NF was the reason why I was having trouble learning.

I have never given up. In fact, having NF has made me work harder than ever.

Once I entered college, I still didn't get good grades, but that didn't stop me from getting my B.A. degree in Psychology, A.S. in Criminal Justice and a few other certificates in other fields.

I would always have to work harder than the other students, and my hard work has always paid off because I have even gotten straight A's in my Criminal Justice Program and Medical Assistant Program.

One defining moment in my NF journey is when I have family and friends telling me that they are so proud of me for studying so hard in school and how I am an inspiration to them.

Decisions About the Future

I was told that if I decide to have children, there is a 50/50 chance that my child could get NF if my partner doesn't have it.

From there, I decided that I don't want to have kids because I don't want to risk passing it down. I don't want my kids to have to go through what I have to go through.

The Life She has Built

I have worked for a nonprofit organization that works with people with disabilities for 12 years. I love working there, and it makes me happy to be helping make a difference in their lives.

My coworkers are like my second family. Working at this organization has been amazing because I don't feel judged. From the day I started working there, they treated me like I was part of their family.

I also have a wonderful partner, Michael, who loves me for who I am. We have been together for four years, and he is amazing. He is also learning about my condition and wants to learn more about it.

I love spending time with him and his family, who have also accepted me into their family. In addition, I have my wonderful family and my best friend, Melissa, who has always been there for me and also accepts me for who I am.

And one thing people might not know about me: I love to assemble furniture! Over the years, I have assembled beds, desks, chairs and cupboards.

NF has been part of Arlene's life since she was six, shaping her medical care, her experience in school and some of the most personal decisions she has made about her future.

Progress in NF research has changed what is possible, but the work is not finished. For people like Arlene, progress must continue across a lifetime-from better understanding and support to more effective treatments and more options for the future. That is why CTF continues to accelerate NF research and treatment development: so people living with NF have more choices about the lives they want to build.