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MANY FACES OF NF IN TENNESSEE
MANY FACES OF NF
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"David Preparing BBQ Beef Brisket" © Rachel Mindrup - 2014
David Gladyness inherited his NF from his mother’s side of the family: his grandmother, his mother, and four of his mother’s siblings, four of his cousins, one of his brothers, one of his brother’s children and both of her children all have NF. In David’s words, “I decided not to have children, I knew I had NF at the age of 5, but was not officially diagnosed until I was 18, I had a tumor removed of of my left hip and it grew back. Two years ago I had major surgery and spent 15 days in the hospital and was diagnosed with Neuroendricine cancer. I had a Whipple surgery, they removed my gall bladder, the head of my pancreas, 17 inches of my small intestine and 20% of my stomach.”
David is a culinary trained chef. He got his love of cooking from his father who was born and raised in Louisiana. It is not surprising that David’s favorite cuisine to prepare is Cajun or Creole. While in culinary school, he had the opportunity to travel to France to cook for the stars in the American Pavilion at the Cannes International Film Festival.
Besides going to Washington, D.C. to lobby for fund for NF research, David is also very instrumental in running and organizing an NF camp for kids in Michigan.
"Jake Hitting the Ice" © Rachel Mindrup - 2019
Jake is a native of Edwardsville, Illinois. He was diagnosed with NF2 at the age of 18 after he noticed he could no longer hear out of his left ear. In 2003, 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 shoulder. He went to Boston where it was suggested they try to treat the NF2 with the chemo drug Avastin. Jake has been on and off it ever since. Even withAvastin, Jake still feel the effects of NF2. He has cataracts in both eyes. He gets nerve pain whenever the weather changes. In 2012, he had to have a second brain surgery, to remove a tumor that was right on top of his skull. The surgery was successful. Jake also describes having issues with fatigue, and he worries a lot about the health of his kidneys because of long-term Avastin use. There’s a tumor on Jake’s spine that is likely going to have to come out at some point.
Jake’s greatest love is hockey. “I was 31 when I started, that’s old in hockey years.” Hockey is a game that requires balance and coordination, two things that NF2 reeks havoc on. 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 had his own hockey jersey made. It proudly displayed the words “NF Fighter” on the front, and “Type 2” sewed on the back. “You’re not just training to play hockey, you’re training to beat NF2. You’re preparing for the next surgery. You don’t suffer from NF2, it suffers from you.”
"Anne Running the Boston Marathon" © Rachel Mindrup - 2016
Anne Shigley Noble has defied the odds most of her 29 years. Diagnosed with Neurofibromatosis type II (NF2) in Atlanta at 7, she had her first surgery in LA at 9, when a tumor paralyzed one side of her face. Against the odds, she came out grinning though deaf in the right ear. Battling NF2, she became a high school runner and swimmer, and dreamed of someday running the Boston Marathon. She had more surgeries her senior year, in Boston for spinal cord tumors which came out without damage, and in LA for an auditory nerve tumor that deafened the left ear too. She finished high school and started college in Tennessee, with help of a captionist, and ran college cross country. In her freshman year she ran her first marathon with classmates cheering her on, then took medical leave to get her Auditory Brainstem Implant (ABI).
Anne transferred to Rochester Institute of Technology / National Technical Institute for the Deaf (RIT / NTID). She had summers in DC for sign language classes at Gallaudet, then NC, CO and PA for YMCA and camp jobs. At RIT, she met Steve, and they married after graduation. She continued running marathons, and with Steve added triathlons. She started a master in early childhood special education but after their wedding, Steve had an offer in NH. Now they are in their second house, in rural Meridan, NH, with a grand view of mountains. Steve is a telecom engineer at Dartmouth College, while Anne is a paraprofessional in early childhood special education. Just before turning 29, Anne fulfilled her dream of running the Boston Marathon - in the mobility impaired division – and raising over $5,000 for NF research with the Children's Tumor Foundation.
"James Running in Uniform" © Rachel Mindrup - 2016
James Mitchell is currently known as “Oklahoma’s 5k Running Firefighter.” At 51 years old NF is not getting him down or even slowing his pace. His tumors didn’t show up on him until his late 20’s. He worked for Kwikset Black & Decker from 1983 to 2005. At the same time he was a volunteer firefighter from 1987 to 2008. Many years ago while James was playing basketball at the local YMCA as part of a work team, a few people began asking him about the bumps covering his body. Honestly, James didn’t really know what they were from and all he could say was that it was something that both his father and grandmother also had. His grandmother has them all over her face whereas he and his dad have them over their body. After the basketball game, the company doctor took a look at him and informed him that he did, indeed, have NF. Many years later, now being aware of the disorder, James started to notice more people in his town also living with it.
James currently works at the Sapula Atwoods which is a family owned store that deals in power tools, home repairs and lawn and garden supplies. One of James’s co-workers, Benny, who used to previously work there also had NF. A few years ago James walked in the Tulsa Oklahoma NF walk in his fire gear and with “NF Team Benny” on his air tank. Benny had wanted to be a firefighter but sadly never fulfilled his dream as he died from NF complications. James has continued to raise support running in NF walks and most recently in the CTF Cupid’s Undie Run raising money and research for NF.
"Cher Packing Lunches" © Rachel Mindrup - 2020
Cher Miles found out she had NF when she was 11 years old. She is the youngest with two older sisters and brothers. Her sister took her to the doctor as her parents had passed away. She is the only one of her siblings to have NF. She isn't sure if it was passed down or if it is a spontaneous gene mutation. Her sister took her to the doctor because of the growing tumors on her arm.
There were two tumors in particular on her arm that were giving her problems. Eventually, Cher had to have her first surgery to take care of them. She was in middle school when it happened and the kids teased her about the tumors. Many of the kids would ask what happened to her not realizing it was a genetic disorder. Some people still ask her that question as an adult. These questions along with the teasing from her childhood left her with low self esteem.
In 1996 she got married and in 2000 moved to Port Wentworth, Georgia. She has three daughters and all three also have NF but with different symptoms. Her daughters seem to take it in stride and don't really complain and do not let it affect their outlooks.
For a long time, Cher worked in the food industry in a nursing home facility but recently switched to working in the food industry at a K-8 school. She did this to be on the same schedule as her niece whom she is helping to raise. Cher's low self esteem faded as an adult and she came to realize that others had NF much worse than her. She learned to be grateful that her NF was not nearly as bad as it could be. She still admits that she doesn't like the tumors and doesn't like to wear shorts and is self conscious of the tumors on her arm, but doesn't feel that it is too bad. She spends her time learning new recipes and keeping up to pace with preparing meals for those kids who still need their lunches even during this time of online learning due to the pandemic.
"Jennifer Advocating on the Hill" © Rachel Mindrup - 2019
Jennifer Berube started puberty early at age ten and had many dermal tumors. Her number of tumors increased significantly during her teen years. At 25, she was diagnosed with NF by physical examination. 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.
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. 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 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.
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 NF Network and CTF. Now, she tries to be an advocate for others that have NF.
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