Saturday, April 20, 2019

Case Study #60 - Jennifer Advocating on the Hill

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Jennifer Berube started puberty early at age ten and had many dermal tumors. Her number of tumors increased significantly during her teen years. At age 25, her family physician referred her to a pediatric specialist for diagnosis. That pediatrician diagnosed neurofibromatosis (NF) by physical examination, because of all the tumors. Genetic testing showed her NF to be due to a spontaneous mutation. Jennifer also started menopause early: at age 38. 

Between puberty and menopause, the number of tumors increased significantly. Over the years, she had many surgeries to remove individual tumors that became painful. In 2012, she had an electrodessication procedure (ED) to removed over 500 tumors at one time on her back.

Growing up with NF, Jennifer had a lot of issues, but is not sure if they were all NF related. As an infant, baby and child, she dealt with many health issues. By age two, she had endured eight eye surgeries to correct a wandering eye. Because of so many surgeries so close together, when she was two, her lungs collapsed and she had an emergency tracheotomy.

Jennifer struggled in school both academically and socially. She endured years of bullying from not only peers, but also some teachers. One teacher in particular, who thought she was not trying hard enough, told her parents that she was a waste of educational money and teacher’s time and was not going to amount to anything. Her mother told her this when she became an adult, but she also endured this type of treatment while in school. However, the more she was looked down upon, the more determined she became to graduate and be successful in her adult life.

Ten years after graduating high school, Jennifer went back to college and had an awesome teacher who realized that she had learning disabilities. No one had ever mentioned learning disabilities to Jennifer before. This teacher helped her to succeed in her class and beyond. Jennifer went on to graduate and get her AA degree in Early Childhood Education. She was working close to full time while attending college and due to her teacher’s help and support, was able to maintain a 3.6 GPA while taking a full load of credits. She even made the Dean’s list one quarter.

It was not easy, but once Jennifer understood her learning disability, she figured out what worked for her and went for it. Jennifer worked her whole adult life until 2017, when at the age of 54, she became seriously ill and her Dr. said that she could not work any more. After 25 years working for the State of Washington, she had to leave friends and coworkers and move on to a new life of retirement. Retirement has allowed her to get even more involved with NF groups. She has gotten really involved with both CTF (Children’s Tumor Foundation) and other organizations involving NF research. Now, she tries to be an advocate for others that have NF. Over many years, she has raised money for NF research with local NF walks. Since retiring, she has attended several NF conventions. She really values the online support of NF friends met through facebook and hopes that she can help them and be a friend.

Tuesday, January 15, 2019

Case Study #59 - Kay Preparing her Vlog

"Kay Perparing her Vlog" 30" x 24" Oil on Canvas. 2019.
Kay Cadiz was diagnosed with NF1 at a young age. Kay did not know that her NF would result in a difficulty learning math. Nor did she anticipate the extent and amount of tumors which would eventually start growing throughout her body. Growing up Kay did not have noticeable tumors or nodules. She did however have cafe au lait spots. She had surgeries to remove tumors on her face and hands. Kay fortunately did not get bullied too much albeit but by one person. Thankfully, she grew up with a friend who also had a different medical condition and to this day Kay and her friend have been friends for over thirty years now.

Kay’s first round of surgeries was when she was about 8/9 years old. She had a tumor on her left chest ribs area. She also had tumors on the corner of her eyes. Later, she went on to have surgeries on her left leg and hands when she was around 13/14 years of age. At age 20 she had to have a tumor removed on her right cheek which made it hurt to smile due to the mass.

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Kay was diagnosed with a Malignant Peripheral Nerve Sheath Tumor (MPNST) November 2017. Radiation therapy soon started. She later had surgery March 2018. The gap was due, in part, to having her recover from radiation first. Because of the location of the tumor, the sciatic nerve was damaged. Today Kay walks with a leg brace for support.

Living in Honolulu, Kay creates her content on YouTube around cooking and eating. She films Mukbangs which is an eating show. Sometimes, she still finds it hard to vlog out in public because of the stares, yet she finds it liberating to just be herself! She also incorporates these vlogs into her channel.

You can find Kay on her YouTube Channel at:

Sunday, January 6, 2019

Case Study #58 - Matt Fly Fishing in Yosemite

Prep Sketch for painting
Matt Hay is a married father of three who works in media sales and marketing. He was diagnosed with NF2 during his sophomore year at Indiana University. As a result, over the last 15 years, Matt has dealt with deafness, facial paralysis, vision problems, and balance issues, as well as long recoveries from a spinal surgery, 2 brain surgeries, and 9 eye surgeries. Matt deals with NF2 by focusing on what he can do rather than what he cannot. In addition to being an avid fisherman, he spends his time raising funds for neurofibromatosis research through NF Walks and NF Endurance events like marathons and, most recently, an IRONMAN distance triathlon. He also earned his MBA degree from the Indiana University School of Business in 2010. These accomplishments were things he once thought impossible due to the physical challenges caused by NF2.

Matt is grateful for CTF’s NF awareness and fundraising work. His involvement with NF Forums and the physicians he has met at those events led him to learning about the auditory brainstem implant (ABI) that allows him to understand speech with the aid of lipreading. 

By staying involved with the NF community and taking part in fundraising walks, runs, and other events, Matt is able to maintain certain aspects of his health that are within his control. He also appreciates the “upward spiral” that he experiences both mentally and physically from interacting with such a supportive community of caring people.