Stories of NF: Libby H.

I was diagnosed with neurofibromatosis type 1 at age five as I had hundreds of cafe au lait spots and family history of NF1.

I wake up every morning hoping to find that my thousands of subcutaneous fibromas have disappeared from my body and I will wake up pain free. However, my mornings are totally the opposite and all of “them” are still there and I'm waking up with lower chronic back pain and neuropathy in my feet. It usually takes a while to “wake up” my aching body.

I try to be optimistic that one day, they will find a way to stop progressive growths.

I'm extremely excited and fortunate that I was chosen to take part in a clinical drug trial for the MEK inhibitor selumetinib last year. Though I discontinued the treatment in the fall of 2020, having had the opportunity to take part in this study means the world to me and I'm ever so thankful. I'm excited for what it is doing for a lot of people with NF.

Increasing awareness for NF makes me happy! Nearly every single day, I find myself passing out NF brochures to either someone in the medical field and/or to a stranger out in public. Awareness is key. In February 2016, I created a Facebook group page for people with NF or parents of children under 18 years old with NF. I started with only two members, myself and my mom. Today the page is over 9,500 NF members worldwide! The goal of the page, in addition to bringing those of us with NF closer together so that we will never have to feel alone with our NF ever again, is to prove the greater need for more medical treatment options and physicians for NF.

My motto is “If we’re not seen, we can't be heard.” I firmly believe that there is so much truth in that. The more of us that 'they' (medical community) sees, the more common NF will become.

My strength comes from my Mom. She helped to teach me fundamentals of life and the will and strength to deal with the hand that I was dealt. My passion and drive for NF advocacy comes from my daughter. She helped me push myself to do as much as I can for the NF community. I never would have gotten where I am today without her.