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.

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: Www.Youtube.com/Ruanneats

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.

Case Study #56 - Tim Mastering 5 Pin Bowling

"Tim Mastering 5 Pin Bowling" Oil on Canvas. 2019. 30" x 24"

Tim Golumbia is a 55-year-old social worker. He was diagnosed with NF1 at about the age of 12. His was a mutation as there had been no NF history in his family. He had café au lait spots and a few growths but nothing significant. He started puberty at the age of 7 and had an early growth spurt resulting in his being taller and hairier than his peers. This resulted in significant teasing and bullying. The ill treatment from his peers intensified due the added burden of a speech impediment and a learning disability. Tim’s coordination and balance were very poor so he did not perform well in sport-related activities in gym class. Tim was shy about changing for gym or going without a shirt not because of the NF tumours but because he was teased about his appearance. School was difficult academically and socially because of his social awkwardness, lisp in his speech and clumsiness.

Tim has had 6 or 7 procedures to remove tumours on his skin. The ones removed were mostly to determine what they were and if they should be a concern. Tim has a growth in a finger on his right hand that has been trimmed twice, the last time when he was 15. Since that time, it has grown back again but he has decided that since it is not in the way or causing problems, he will leave it be. In around 2005 he had some small growths on his neck removed as they were being irritated by his shirt collars. Tim is not bothered by the presence of his tumours and does not feel it is necessary to remove them unless they are causing pain or other problems. He wears them with pride and welcomes questions and queries from strangers about what they are. An acquaintance once asked him why he never had a large tumour on his temple removed and Tim asked why the person why it should be removed. It is a part of who he is and it does not bother him.

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Tim did not meet any other peers who had NF until around his 40th birthday. He attended a symposium in Vancouver and it was an eye awakening experience. He sat at a table with a number of parents of young children who inundated him with questions about his experiences and for thoughts of what they may expect to experience as parents. He also felt comfortable yet uncomfortable around other people who had NF. It was a strange experience to see others with bumps. But the level of comfort grew quickly but also gave time an understanding of how others may feel and react when they meet him. Not long after this first symposium, Tim was contacted by the executive director of the British Columbia Neurofibromatosis Foundation (now known as the Tumour Foundation of British Columbia) about becoming a board member. They had felt Tim’s positive energy and thought he would be a great addition to the board. Within months Tim was on the board and acting as treasurer. Shortly after that the President had to step down and Tim stepped into the position. He was awarded the BCNF Paul Ralfs Volunteer of the Year award for 2012 by the board of directors. Tim resigned from the BCNF board in 2015 but became vice president of the Alberta Tumour Foundation in 2016.

Tim’s learning disability affected his schooling. His intelligence was higher than normal but he performance was low. He tried attending a university but did not get past the first year due to his low marks… a few years later he tried again and succeeded. The difference the second time was
that he had a computer that allowed him to get his thoughts down in an organized manner. He also had a new passion to become a social worker. He graduated with a Bachelor of Social Work. He used that degree to enter the field of Child Protection, or Child Welfare Services. He has been employed continually since 1993 in this field.

In 2010 Tim was working one day in Nanaimo British Columbia when he was asked to assist a child services office in Edmonton Alberta. Tim was asked to interview children staying with family in Nanaimo to assist with an investigation in Edmonton. During the initial phone call, he mentioned he talked about his bumps as a way of breaking ice with children… and mentioned they were called Neurofibromatosis…. The Edmonton worker replied that she had a co-worker with NF and then asked Tim if he was single. She referred to herself as cupid and the interrogation began. 2 days later Tim was talking to Gail. It became a daily one-hour phone call for the first month at which point Tim sent Gail flowers, and Gail then booked a trip to Nanaimo to meet Tim 2 months later. The courtship continued with each visiting the other’s home twice a year. Tim Proposed in April 2012 and Gail said yes! Tim moved to Edmonton in June 2013, they were married in August 2014 and they continue to live a wonderful life together today.

Tim enjoys golfing, 5-pin bowling and walking their dogs. Tim continues to work in Children’s services and plans to retire in early 2021.

Case Study #55 - Jake Hitting the Ice

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Jake is a native of Edwardsville, Illinois, across the river from St. Louis, Missouri. He was diagnosed with NF2, in January 2003 at the age of 18 after he noticed he could no longer hear out of his left ear. In June 2003, one week after graduating high school, he had surgery to remove the left acoustic neuroma. Five years later, Jake lost the hearing in his right ear, and was left completely deaf. It was also discovered that he had a winged left latissimus dorsi muscle due to one of the spinal tumors. The deformity had really deteriorated the range of motion in his left shoulder. Jake’s doctor, Dr. Benecke, suggested sending him to Massachusetts General Hospital in, Boston. It was there he met Dr. Scott Plotkin, who suggested they try to treat the NF2 with the chemo drug Avastin. Jake has been on and off Avastin ever since, and the drug has been extremely effective in helping him keep his NF2 symptoms in check.

Despite the positive effects Avastin, Jake still feel the effects of NF2. He has cataracts in both eyes. According to him, that can make golf a little complicated; his playing partner will have to help him track his shots. He gets nerve pain whenever the weather changes. There are good days and bad days. And he says you can’t really predict which days are going to be good and which are going to be bad. Jake’s philosophy, “I just kind of take life one day at a time.” In January 2012, Jake had to have a second brain surgery, to remove a tumor that was right on top of his skull. The surgery was successful, in large part due to the skill of his surgeon, Dr. Curry. He had to spend a week in Boston post-op, but his recovery was amazingly fast. To quote Jake, “I was very lucky.”

Jake also describes having issues with fatigue, and he worries a lot about the health of his kidneys because of long-term Avastin use. Because of this, he tries to really be mindful of what he puts in his body. According to Jake, “I drink at least a gallon of water a day, and avoid gluten, dairy, and any kind of processed food. I’m always gearing up for the next battle.” There’s a tumor on Jake’s spine that is most likely going to have to come out at some point. The surgery is going to be a challenge but he’s prepared to deal with. He realizes the recovery will no doubt be a grueling process. While the surgery is not official yet, Jake is already working out a recovery plan. His chiropractor, Dr. Ashley Eavenson, has promised Jake that even though he won’t be able to hear the music, she will at his request, blast the Rocky theme song in the training room, while he knocks out rehab sessions.

Jake has a degree in Creative Writing, which he obtained online through Southern New Hampshire University. He’s attempting to write a book, detailing his battle against NF2, and his life as a late deafer. It’s a work in progress. “I have a long way to go.”

Jake can’t hear and that’s a major setback, but his mentality is that if you focus enough on what you can do, then what you can’t do is irrelevant. “NF2 sucks but you deal with it and make adjustments. I enjoy being active, it’s a good way to boost confidence and deal with the anxiety NF2 causes.”

Jake’s greatest love, after his little sister, nieces and nephew, is hockey. According to Jake, he picked it up late in life. “I was 31 when I started, that's old in hockey years.” He pursued it anyways because it struck him as a great way to fight NF2. Hockey is a game that requires balance and coordination, two things that NF2 reeks havoc on. None-the-less, he figured it out. Jake makes it clear that It was by no means easy. “I spent the whole summer that year, doing really brutal conditioning work, because I knew my body would have to work twice as hard, to compensate for my less than optimal balance.” That was a little over two years ago; he’s been playing ever since as much as possible. Jake’s blunt in saying, “I have no fantasies about being the best player on the ice.” He makes it clear that’s not what it’s about; it’s about knowing that he didn’t let NF2 stop him. It took him a lot of reps, but he’s gotten to the point that he feels comfortable and confident on the ice. “While I’m by no means graceful, I’ve overcome the mental roadblocks and taught my body a lot of new moves and motions.”

Jake sees playing sports as a great way to hit back at NF2. It keeps his body healthy physically, and it feeds a certain part of his psyche that nothing else feeds. Jake also hopes to show other patients, especially kids with NF2, that their disease doesn’t stop them unless they let it. In an effort to spread awareness, Jake had his own hockey jersey made. It proudly displayed the words “NF Fighter” on the front, and since he has NF2, he had the words “Type 2” sewed on the back.

Hockey is tough, and it’s not for everyone, but Jake say’s for him, it’s the best method for coping with NF2. To quote Jake, “I’ll be out on the ice either playing or training, and I’ll be just totally gassed, my legs shaking, and my brain begging me to stop. Then I look down and the “NF Fighter” on my sweater. Then it hits me. “This is it dude, this is where you beat it, right now in this moment. You’re not just training to play hockey, you’re training to beat NF2. You’re preparing for the next surgery, by making you’re making body and mind too strong for NF2 to handle. You don’t suffer from NF2, it suffers from you.” Jake has resigned to the fact that he’ll have to go under the knife again. In those moments, he likes to remember a quote from his martial arts instructor, Joe “THE Boss” Mayberry, “chicks dig scars and you come across one that doesn’t dig scars, she’s not worthy of your time.”

Case Study #54 - Gail Golfing the Course

"Gail Golfing the Course" 2018. Oil on Canvas. 30" x 24"

Gail is a 57-year-old, 2nd generation, individual with Neurofibromatosis, NF1. She was born with a large tumor on the left side of her chest. The doctors did not know this growth was NF until she started puberty and more small bumps started growing on her body. When she was 20 years old, Gail had an NF tumor on her chest removed that measured approximately 9 by 12 inches. She almost did not survive the surgery due to blood loss. However, she was determined to live. Because she survived, Gail saw this as “her calling” and an opportunity to spread awareness of NF.

Throughout the years, Gail was teased, bullied and ostracized due to her physical appearance. Besides the stares and name calling, she was asked not to swim in public pools, not to touch fruit at the market and people would refuse to sit next to her. Many people thought her condition was contagious. Gail took these situations as an opportunity to let these individuals know about NF.

Prep Sketch for "Gail Golfing the Course"

Gail has had close to 40 surgeries over the years, removing bumps/tumors that are creating pain or difficulty for her. However, this has not slowed her down, as she has played many different sports over her life span, and continues to this day, including swimming in pools. She has 2 university degrees in both sociology /pyschology and social work and has spent over 31 years working as a social worker.

Gail has been very fortunate to have some amazing and loving friends and family that have accepted her for the way she is. She got married when she was 53 years to a man who also has NF.
Gail says, “when I look in the mirror, I don’t see NF, I only see my big bright smile and my mischievous eyes looking back at me.” Gail wants everyone to know that individuals that are affected by NF are just regular people. They have hopes and dreams. They eat, drink, sleep, laugh and cry, just like everyone else.

Gail has actively participated with the Alberta NF support group. Assisting individuals living with this condition and letting them know they are not alone. Gail is on the Alberta Tumour Foundation Board which supports and assists individuals and their families, as well as to educate others.

Case Study #53 - Ameliana strolling the Ramadan Bazaar

"Ameliana Strolling the Ramadan Bazaar" 2018. Oil on Canvas. 30" x 24" 

Ameliana Meahan Yap fondly known as Amy was born in sunny Singapore. She is the first person in her family to be diagnosed with Neurofibromatosis Type 2 (NF2) at the age of 18. During her adolescent years, she had undergone several minor operations to remove external growths on her back, neck and eyelid.  Back then, they did not link it to NF2 and only mentioned that the cells were schwann cells. They also found out, due to poor eye test, that her left retina has a scaring which was initially misdiagnose as a lazy eye until a second opinion was conducted. Apart from the scaring, she had a floating eye and underwent surgery to correct it.

She did not face any issues during her early teenage years however at 18, she started to experience a sudden ear block on her left ear which she had thought was due to swimming. It did not subside for months and she also started to experience severe headaches. Upon undergoing an MRI, it was revealed that she had a large growth on her auditory nerve which cause the blockage and hearing loss. She also had another on her right auditory nerve and several others in her brain. It was then they relooked at her medical history and concluded she has NF2.

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She underwent a radiosurgery known as Novalis instead of an operation for her left growth as it was large and growing very near to the brainstem. They wanted to leave the right growth alone to save her hearing. Unfortunately, months later she would lose it overnight and eventually become completely deaf. During this time, her neurologist arranged an MRI for her spine where it was confirmed she had more tumors alone the spine region. They were left untouched but monitored since there were no issues then. The novalis had fortunately worked in shrinking her left growth significantly.

The loss of her hearing and medication to help with the brain swelling, which at one point caused her to temporarily lose her vision, made her mentally unstable and she had to make a difficult decision to withdraw from her Biomedical diploma to focus on her recovery. She had slipped into depression feeling lost with the now silent world and facing rejections from family members, friends and later on while trying to resume schooling and eventually on getting a job. Thanks to her supportive love ones especially her partner, Damian, she was able to keep fighting on even when things look bleak.

Damian had also helped her cope with learning a new way to communicate with each other via texting, writing and creating their own sign language. It spurred her on to attend sign language classes that brought her into the world of the Deaf community.  Being with other Deaf individuals, she learned how to adapt better into the silent world and became more positive. During the same time, she was offered a job as a Junior Operation Executive at a translation company where she liaises with translators from all over the world online. The job role had boost her confidence and self-esteem as she was given an equal opportunity and treated the same way as hearing individuals. She did not feel she was seen as different.

After gaining 5 years of experience, Amy decided to take a leap of faith and challenge herself further by switching to a multinational company to become an administrative assistant for office support. Her job there requires her to communicate with individuals directly unlike at her previous workplace and handle more roles. She hopes with different roles, she would eventually find out what is her niche and at the same time she would like to create awareness for people with special needs and illness. That through her presence working in the company and constant feedbacks on how the company can assist her, that it will be a more inclusive place which might open up more job opportunities in the future for this group

Being an active person, she joined a dragonboat team comprising of deaf paddlers and hearing volunteers. Later she also signed up to a gym and started to do more strength training which had helped play a part in improving her balance tremendously. Yet again with the support and encouragement of Damian, she has also tried more things such as going back to cycle on 2 wheels and hiking. Still, her favorite is swimming as she loves being in the water. Together, they had also swam with wild dolphins in Perth during their holiday.

Amy believes that with NF2, every moment is very precious and therefore we should seize each and every single day. We should not let the future scare us and prevent us from attempting new things or even revisiting things we used to do. She believes to that as long as you know your limit, give it a try. At least you won’t have to look back wishing you had done it back when it was possible.