Case Study #61 - Ashley Doing CrossFit

Ashley Doing Crossfit - 2019 - 30" x 24" Oil on Canvas.

Ashley was diagnosed with NF Type 1 at the age of two. Her NF was due to a spontaneous gene mutation. Starting at age two, she started undergoing MRIs. School was hard for her because of her learning disability. But she didn’t want NF to define her, so she found out how she needed to learn to understand things better. Ashley graduated high school with a 4.0 GPA. She also attended Valley City State University and graduated with 3.56 GPA. Then she went on to Massage Therapy School and graduated with top honors..

Ashley remembers coming home many days from school crying because she was bullied for the fibromas she had on the outside of her body or because she was going to different classrooms to learn or take tests. Ashley had a hard time trying to fit in because of how people looked at her because of her bumps and she felt like an outsider. Sometimes to this day she still feels like an outsider because of her NF, but does have a couple good friends and some amazing family members who mean a lot to her. They don’t treat or look at her different just because she has NF.

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Some NF side effects Ashley deals with daily include slower hand-eye coordination, balance issues, dizziness, numbness in her right hand and right foot, constant nerve pain throughout the body and headaches. Comprehending some new things are still hard for her, as well as reading and spelling sometimes.

Ashley has multiple MRIs every 6 months to once a year on her brain, whole spine, hips, pelvis, and breasts. She also has PET scans every 4 to 8 months. Ashley travels to the Mayo Clinic in Rochester MN from Fargo ND about every 3 to 6 months for doctoring for her NF due to having no qualified NF specialists in North Dakota. Ashley has to have biopsies now and then when a neurofibroma looks suspicious on the MRI. She has many fibromas inside her body and also on her skin. So far she has only had to have one major surgery to remove a neurofibroma from her left side of her neck that was on the vagus nerve ~ the fibroma was over the size of a lime. She has also had many neurofibromas removed on her skin due to the shooting pain in that area if it was ever touched.

Dealing with the nerve pain Ashley experiences daily, she enjoys attending a CrossFit gym 4 to 5 days a week and runs 2-4 miles a week on her days off from CrossFit. Ashley started CrossFit in March 2017. She shows up consistently and does the work even on her bad days when the nerve pain and numbness is higher than normal. There are some things she needs to modify during the workouts due to her nerve pain throughout her body and the numbness in her hand and foot. In January 2019 Ashley was awarded the Grit award from CrossFit Fargo during the athlete appreciation social.

Ashley is a licensed massage therapist and reflexologist and owns her own Massage Therapy business called Ashley Rae’s Massage which she opened in 2011. She has a steady client base and keeps very busy with that.

In October of 2016, Ashley ran a 10K to raise awareness for NF. She ended up raising $1550. She beat her goal of 1 hour and ran the 10K race in 58:16. She got to wear a Run for NF singlet, during the race. Ashley now goes to Washington DC every year to talk with congress to help raise awareness for NF and asks for NF research funding through the Congressionally Directed Medical Research Program (CDMRP).