We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Kate Duff of Massachusetts.
When our adult daughter Megan was about three years old, I noticed several bumps on the side of her head, and some brown spots on her belly. After meeting with her pediatrician, Megan had surgery to remove the bumps.
The week after the surgery, her surgeon called to say that what he removed were tumors and that Megan had neurofibromatosis (NF), and that we would be hearing from her pediatrician, and he hung up the phone. This was in 1987. There was no quick or easy way to look up information on NF, and never mind trying to research - I had NO idea what the surgeon even said.
Our pediatrician told us what NF was and that Megan most likely had this disorder, but she had never had a patient with NF. She gave us a Neurofibromatosis Northeast pamphlet that detailed what seemed to be a lot of scary things about the disease. We left the office overwhelmed and just couldn't believe that our perfect little girl had this horrible disorder. We agonized about Megan’s future.
The next day, I called the number on the back of that flier. What I know now is that that was a lucky day for my family and me. The nonprofit organization Neurofibromatosis Northeast and its executive director, Karen Peluso, have saved my family and Megan many times over the last 28 years.
Although NF has brought us challenges, it has never been too serious or life threatening. Megan has had her share of surgeries to remove painful and disfiguring tumors, and she has dealt with learning disabilities that she has overcome to become a college graduate.
But in October 2013 all that changed. A week before her 30th birthday, I had to give Megan the news that she had aggressive breast cancer. We learned that people with NF have a four times greater risk of having breast cancer.
Megan has had a double mastectomy, reconstruction surgery, two rounds of chemo, and now doing radiation and a 3rd round of chemo. We have approached her breast cancer as we have approach her NF - by taking one day at a time - and living this way has truly helped her stay positive thru her treatments. Even with her NF, Megan has never asked, "Why me?" She handles all of this with amazing courage and grace. She is my hero.
Five years ago I met a group of mothers whose young children were recently diagnosed with NF. I wanted them to meet Megan to see how bright their children’s futures can be; I wanted them to know it's not all gloom and doom.
If we can keep the doctors at the microscopes so they can find a cure for this horrible disorder, maybe we can make patients' quality of life better and not so scary and uncertain. Research money is what will allow that to happen.
When Megan was first diagnosed, a dear friend said how sorry she was, and that she just couldn't find a silver lining in all of this. But my friend was wrong. Through this journey with Megan and NF, we may not have seen it right away, but it was there: All the amazing, caring and generous people we've met along the way are the silver lining.
Kate Duff lives in Massachusetts with her family. For the past three decades, through Neurofibromatosis Northeast, Duff has helped raise money for NF research, and also support families affected by NF.
Photo by LadyDragonflyCC