Case Study #65 - Jen Backpacking the Countryside

Prep Sketch for oil painting

Jen was diagnosed with NF1 at the age of thirty. When her step-mother convinced her to see a dermatologist due to the numerous “bumps” she had on her chest and back. The dermatologist took one look at her and told her she had Neurofibromatosis. The dermatologist told Jen that she could go home and google information about NF or she would refer Jen to a neurologist. Knowing what google can tell a person Jen went to see a neurologist which confirmed the diagnosis of NF and led to another diagnosis. The neurologist sent Jen for multiple MRIs including one of the brain. The MRIs showed multiple tumors down her skull, spine, and tailbone; but, the most shocking was a 2-cm mass that was found on the pituitary in the brain. This type of tumor causes Acromegaly, which is something completely separate from NF and having both is extremely rare.

Growing up Jen knew she was different from others including her siblings. She remembers going to different classrooms to learn and take tests. She recalls a teacher telling her that college might not be in her future. With determination, perseverance, and strength she not only went on to college and obtained her bachelor’s degree. Six years later she went back and graduated with her master’s degree, all while learning of her NF diagnosis, she earned her master’s in elementary administration and teacher leadership and graduated with a 4.0. Jen is an elementary educator and has taught many grades, was an instructional coach, and recently started teaching physical education. Her most memorable years of teaching were the two years she taught overseas in Dubai. After learning of her NF diagnosis and having brain surgery to remove the tumor from the pituitary, Jen told herself life is to short and packed 3 suitcases and moved to Dubai for two years.

Jen enjoys traveling, working out, and spending time with her family and friends. She has traveled to over 15 countries and is looking to fill her passport before it expires in the next couple of years. She works out 5 to 6 days a week and considers her gym family as another family that she can lean on for support.

Jen use to be scared to share her story, thinking no one would be interested in hearing about it. Once she realized the importance of sharing her story she has shared it over and over again. In February 2016, Jen was living in Denver and with the support of her family and friends they did their first Cupid's Undie Run altogether.

Currently, Jen is living in Kansas City and is involved with the NF Central Plains chapter. She is looking for more ways to be involved with raising awareness, finding a cure, and the fight against NF.

Case Study #64 - Micki Baking Peach Pies

Prep Sketch for oil painting

Micki Cole always wondered what the “spots” were on her body and why she had so many “birthmarks” on different parts of her body. Despite having gone to many doctors regarding headaches, pain, struggles in school, it would take her 25 years and a chance encounter with a radiologist to lead her to the answers she had longed for all those years and she received her diagnosis when she was 25. Micki struggled in school, mainly difficulties in math and was placed in special education classes. With the assistance from her family, Micki was tested at the Mayfield Clinic in Cincinnati, Ohio and it was found that Micki was gifted and placed back into mainstream classes, but she still struggled. In high school teachers weren’t supportive, and she was often discouraged from exploring things she was interested in, at one point even being told “she wasn’t college material”. Growing up Micki experienced pain in her legs and grew very fast reaching five foot seven by fifth grade, this pain was diagnosed as growing pains and the horrible headaches were said to be attention seeking behavior, something she tried to explain was real but was often ignored. Despite what she was physically going through Micki was extremely active in sports, running track and field and playing softball.

After high school Micki worked and put herself through college, it was there where her life changed. In high school she was picked on for having skin that looked different and for having “bumps” all over her arms and legs. But in college she met a group of friends who accepted her and helped her come out of her shell, she learned about true friendship and she is still friends with these people twenty-five years later. It was also when she learned about Neurofibromatosis (NF). When she was twenty-five Micki was sick and went to the emergency room with difficulty breathing, upon having an x-ray the doctors discovered a “spot” on her lung and suggested follow up. The radiologist Dr. Roush happened upon Micki as she was getting dressed and noticed the café au lait marks. He said “oh, you have neurofibromatosis”? With a puzzled look Micki asked, “neuro what”? Micki had never heard this despite having gone to several doctors over the years regarding “the spots”. After this interaction and a referral to his friend, a dermatologist, she received confirmation of NF1. Upon the initial diagnosis Micki was terrified from what she found in medical journals and the difficulty she had trying to find a doctor to treat her. But luckily, she found a doctor who knew a doctor that lead her to a wonderful group of doctors at The University of Cincinnati who help her navigate the ups and downs of NF1. Micki has had a hysterectomy in addition to surgeries to remove tumors from her lung, leg, arms, back and eye. After much consideration and research, she made the decision not to have children due to the risk of passing it on. Micki continues to deal with chronic pain and has had to learn to adjust to life with it.

Despite the diagnosis Micki has gone to college and graduate school where she graduated in the top five percent of her class. She has worked with people with disabilities for over twenty years. Micki has hiked a small portion of the Appalachian Trail even making it up to the top of McAfee Knob in Virginia, while her softball days are few and far between, she has found a new passion for baking, gardening, hiking, biking and golf. She has completed 4 half marathons to raise awareness of people with disabilities and has raised money for NF research with these half marathons. You can find her on nice days doing one of these activities or volunteering for a few different causes.

While receiving the diagnosis and living with NF is not easy for the individual or the family, Micki wants to let the world know that people with disabilities hidden or visible are people too. You too can reach your dreams with determination and support from loved ones. On bad days when Micki is struggling with pain from NF or struggling with feeling down and isolated because it hurts for someone to touch and comfort her. She tries to remember, God gives his toughest battles to his strongest warriors. Micki will continue to fight for her fellow NF Brothers and Sisters.

Case Study #63 - Jose Renewing his Vows

"Jose Renewing his Vows" - Oil on Canvas. 30" x 24". 2019

Jose grew up in the Riverdale neighborhood of the North Bronx, in New York City. He lived there with his stay at home mother, his father a US Postal Carrier, and his older brother. At a young age, Jose knew he had several café au lait spots but was always told they were birthmarks. He was born with NF1, passed onto him from his father. It wasn’t until he was a teenager that he knew he also had NF. His doctor never brought it up, and his family had a very little understanding of it. Jose would wear a t-shirt in the pool because other children would ask him about his spots, and that made him very sad. They would taunt him, and say many hurtful things. It wasn’t until his teenage years when he started developing confidence in his appearance.

prep sketch

Years later, life brought him to the beautiful Pacific Northwest, and he resides in a suburb of Portland, Oregon. He has been married to his wife Stephanie since 2008, and they have three girls: Dalia, Shea, and Izabella. Shea and Izabella also have NF1. With a better understanding of NF, the Torres family has worked hard to create more awareness around NF in their community. They worked with a local dance academy to put on a recital/fundraiser that raised thousands of dollars for the Children’s Tumor Foundation. Additionally, they raised money to light up an iconic bridge with Green and Blue on NF awareness days, and they have taken part in multiple NF Walks. Although the tumors have become numerous in Jose’s adult life, NF1 has not stopped Jose from loving life, and he does not allow his NF1, and the bumps (tumors) on his skin define him. Stephanie and Jose are raising their children with that same attitude. When Jose isn’t spending time with his family, he is enjoying his job as the Associate Director of Sales and Training for Oregon Market, a large retail company. 

The painting is of Jose, on one of the best days of his life. He is renewing his vows with his wife of 10 years. She has not only been the best life partner he could have, but she has become a voice, and force creating NF awareness in the community. On September 15th, 2018 Jose and Stephanie were finally able to have the wedding they always wanted. It was just a few days after their 10th wedding anniversary. 10 years ago, Jose’s mother was suffering from a terminal cancer known as Multiple Myeloma, it was very important to both Stephanie and Jose that his mother got to see him get married. They scheduled a date at the court house, and his mother was able to see her youngest get married. Between a move back to Oregon from New York, 3 children, and a full decade the time was finally right. The day was perfect, many family members, and friends spent a beautiful evening together celebrating the love that Jose and Stephanie have for each other. 

Jose encourages everyone with NF to not let NF alone define them, and seek out what makes him or her happy. He fully understands the difficulty that NF can cause in people’s lives, and hopes that one day it is a thing of the past. He encourages all NF fighters to keep fighting, and spread the word. He believes that through awareness, we can find a cure.

Case Study #62 - Lizzy Getting Engaged

"Lizzy Getting Engaged" - Oil on Canvas. 30" x 24" 2019

In July of 1993 Lizzy Hubbard's family and her life changed. What started as an eye doctor appointment for what was thought to be a lazy eye, turned into a more significant appointment with an ENT. He ordered a biopsy that turned into the conversation about her having Neurofibromatosis, that ended in “oh she has tumors, don’t worry about it.” As well as other nonsense like “she's going to be blind and/or deaf, She will have mental delays, she wouldn’t be able to do what ‘normal’ kids do and she won’t live passed age 9” Not too long after that procedure the tumors started to grow.

Lizzy has two prominent ones in her face and neck. They hurt, and they can’t be removed easily.
Soon after that she started school, and with that brought the beginning of the bullying, and later when she realized that she looked different however she didn’t understand why. For years Lizzy couldn’t look in a mirror without sobbing and asking herself "Why do I look this way?"

prep sketch for Lizzy Getting Engaged

When Lizzy was 6 she finally got to meet others who had gone through similar struggles (although with different conditions). She started to become slightly more comfortable with how she looked, but still was getting bullied a lot, with comments ranging from “did she get hit in the mouth with a shovel” to “If I looked the way you do I’d have killed myself years ago.”

It wasn’t until Lizzy was 10 that she met someone else with NF, but she really didn’t stay connected with them. At age 14 she heard about Camp New Friends and started to feel connected to a community that understood what she was dealing with and could give her advice on what to do or just let her vent. Even though she had met many others and started to feel connected to this new community the struggles with how she looked were (and still are) very much in the forefront of her struggles with her identity and confidence. Up until about a year who she would be extremely uncomfortable with wearing her hair up, unless she had to. 

Lizzy is slowly gaining confidence in who she is and learning that NF is part of her identity and accepting that she can’t change her appearance nor can she change how people react to it. Yet she can change how she reacts to how others reactions to her. Lizzy has also thrown herself into fundraisers for NF like the Cupid’s Undie Run.  To quote her, "I have NF but NF doesn’t have me."

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.

Prep sketch

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).

Case Study #60 - Jennifer Advocating on the Hill

"Jennifer Advocating on the Hill" Oil on Canvas. 2019. 30" x 24"

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.

Prep Sketch

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.

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.

Prep Sketch

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