I wasn’t diagnosed with NF1 until I was 23 (Dec 2013). I went to the doctor for a regular check-up. She heard me wheezing, and asked if I had asthma. I responded with a “not that I know of.” She decided she wanted to get a CT scan, so I went right after her appointment. I received a call from her nurse later that day to come back into the office. That’s when I found out I had a large tumor in my right lung. Fast forward a couple months later (Feb 2014), when I had a bi-lobectomy to the right lung, I found out I had NF1 and MPNST/Sarcoma (stage 3). That’s also when I found out that my mom who had passed from Sarcoma in 1999, had also had NF1. They found out towards the end of her life, but the information never made it to my siblings and I. I finished my treatments in December of 2014…yeah! I have had small/minor neurofibroma surgeries since then, but I am still pushing forward!
The whole process of finding out and experiencing NF, has been a defining moment for me. I had so many plans, but they didn’t turn out how I thought they would. And that’s okay. I have met so many wonderful people in the NF community. I wouldn’t change a thing. I am currently in (2) 5-year clinical trials with Johns Hopkins. One called the (NF1 Biomarker Research Study) where I take full body MRIs once a year and another one called the (NF1 Natural History Study) where they have a lot of cameras in a room that takes lots of pictures of the body/café au lait spots. Also, whenever I have neurofibromas removed, I allow the team to take a portion for study purposes.
NF1 has slowed down my life, but hasn’t stopped it. I am more tired than the average 32 year old, and wish I had better sleep…but don’t we all? I had to learn a new way of living with the issues that come along with NF; like memory issues, fatigue, and living with a partial lung (humidity/heat is not my friend). As for my future plans, due to the chances I could pass this genetic disorder to my future children, I will be using IVF/genetic testing of egg route, so I can try put a stop to the disorder at least through my lineage.
I love the field of public health, and I like to work on projects for those in less fortunate situations. I love to read. I love old shows and music.
Favorite Music Group
Maverick City Music
Dream Superpower
Teleporting…would make travelling a breeze.
Favorite Food
Thai food
Fun Fact
I not only look just like my mom, but I mimicked her health issues right down to the NF1, the type of sarcoma, and the tumor in the place. The doctors were shocked. I always tell people she cloned me, haha!
