Morgan’s Story: Because Research is Only Part of What We Do
Morgan reached out to the Fibrous Dysplasia Foundation (FDF) in March of this year. “I’d like to speak to someone,” she wrote, so the next day Deanna Portero, FDF’s Executive Director picked up the phone and gave her a call.
Before the phone call, Morgan had gone through years of dealing with terrible migraines and sinus infections. Subsequently she was diagnosed with craniofacial fibrous dysplasia. “I’m a paralegal, and the law office is the kind of place where you DO NOT take sick days. I had always thought I was picking up illnesses from my co-workers and their kids, but my mom thought there must be something more going on and encouraged me to get an MRI.” The MRI lead to further testing, a CT scan, a biopsy, a bone scan, and finally, her diagnosis.
“At first it was a relief to have a name for what was happening to me. The doctors kept saying ‘It’s benign, it’s not cancer, you’ll be fine.’ Despite the benign diagnosis, I kept thinking that, at least with cancer, there’s some understanding and research out there about it.”
In those first few months after diagnosis, Morgan felt really positive, but her first surgery didn’t bring much relief. She realized she needed more medical and emotional support. She was still suffering with severe pain, migraines and sinus issues. She’d lost two jobs since her diagnosis. Her “benign” condition left her with a deep depression, and she was feeling increasingly hopeless. “Before that surgery I wanted to “beat it,” but I started to realize that this isn’t a “go-away” kind of thing. There’s no cure for FD.”
That’s when Morgan found the FDF and sent her initial email to Portero. Morgan’s email could not have come at a more crucial time in her treatment.
The specialized oncologists Morgan was seeing wanted to try radiation on the remaining lesion, a course of treatment that any well-informed clinician knows is ill-advised. During their first phone call, Portero explained that there was, in fact, a growing body of research on FD, and the evidence suggested that radiation predisposes FD bone to malignant transformation. Morgan did NOT need cancer in addition to her current medical troubles.
After this phone call, Portero sent Morgan a list or resources, conference videos, and support groups to contact. “Honestly, I don’t know where I’d be without the FD community,” said Morgan, “Without their empathy and the support of my husband and immediate family, I don’t know where I’d be. I need people who are sharing ideas of what works and really seeking solutions. There are days I just go on Facebook and vent, and I know it’s okay to say whatever I feel. They are the ones who get it.”
Morgan is still facing difficult decisions on how to treat and manage her FD. She has a new job and she’s considering a second, very complicated surgery. “I’m 34, I have a great marriage and a full life, I shouldn’t be experiencing this pain and exhaustion. There’s got to be another answer.” Morgan hopes to make it to the next FDF Family and Patient Conference so that she can meet the people who she’s turned to so many times this past year. “With all the appointments and the test results, it’s so rare for someone to stop and ask me how I feel and how I’m doing.” Sometimes that support can be just as important as the research.