Tuesday, January 15, 2019

Case Study #59 - Kay Preparing her Vlog

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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.

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: Www.Youtube.com/Ruanneats

Sunday, January 6, 2019

Case Study #58 - Matt Fly Fishing in Yosemite

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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.