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.