May was Neurofibromatosis (NF) awareness month, a disease I struggle with daily. I actually began writing this in May and I am just now getting the courage to post. According to The Children's Tumor Foundation, "Neurofibromatosis, also known as NF, is a genetic disorder that affects 1 in every 3,000 people. he disorder is characterized by multiple café au lait (light brown) skin spots and neurofibromas (small benign growths) on or under the skin, and/or freckling in the armpits or groin. About 50% of people with NF1 also have learning challenges. Softening and curving of bones, and curvature of the spine (scoliosis) may occur in some patients with NF1. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. While NF tumors are generally not cancerous, they may cause health problems by pressing on nearby body tissue. Sometimes a benign tumor may become malignant (cancerous), but most people with NF1 will never develop a malignant tumor" (www.ctf.org).
I was diagnosed with NF1 as a small child. I never thought anything about it when I was young except I had to go to dermatologist once a year. I was never treated different or like I was sick. It was just a part of me. When I graduated from high school I was offered a scholarship from Vocational Rehabilitation because of the disorder. I had maintained a 4.0 and been a cheerleader all through school and the program wanted to help me with tuition. This is the first time I felt different. I was very thankful for the scholarship but did not want my peers to treat me different or look at me different than they had since kindergarten. I realize now that I should have been stronger. I could have helped someone else but I let my insecurity win. I accepted the scholarship but would not let them announce it at awards night. When I turned 20 I had a neurofibroma removed from under my arm. It was not causing me any pain but I was very self conscious of how it looked. I began seeing a neurologist at around the age of 21. I had yearly MRIs and for the most part was doing well. I married my college sweetheart and we began our life. I had always been advised to really think about having biological children because of NF. My husband knew before we got married and we decided to tackle the mountain together. In 2011, we went to see a genetic doctor. She suggested I have a complete scan and if it comes back good I could try to have a baby. The scan that year showed a plexiformfibroma growing on the top of my skull on my frontal lobe. According to the NF Center: "Plexiform neurofibromas are larger, more extensive tumors that grow from nerves anywhere in the body. Unlike cutaneous neurofibromas, plexiform neurofibromas are often found in young children, sometimes even present around the time of birth. Plexiform neurofibromas may be located around the eye socket, face, arm, leg, back, chest, or abdomen.Plexiform neurofibromas do not always stay benign throughout life, as cutaneous neurofibromas do. Uncommonly, a plexiform neurofibroma may change into a cancer, called a malignant peripheral nerve sheath tumor (MPNST)." The neurologist referred me to a neurosurgeon and I had two more intensive MRI before a surgery was scheduled. I hated having to shave the top of my head and as vain as it sounds that was the one thing I was worried about. I knew the Lord would take care of the rest. I recovered well from surgery and returned to work three weeks later. I had to wear headbands for a few months but my hair eventually grew back. The saddest part was because of the bad scan the genetics recommend my husband and I not have a child biologically. I continued to have regular MRI and in 2014I had a tumor removed from my left heel. This surgery was worse than the one on my head because I could not walk for 6 weeks. I was miserable. I still have some scar tissue there but for the most part my foot is doing much better. My neurosurgeon recently found a tumor on my left occipital nerve which may be the cause of all my migraines. I have them at times where I cannot get out of the bed. Before surgery they have tried three rounds of nerve blocks into my occipital nerve. These were terrible and did not help. I do not think I will every do this procedure again. I have not decided yet if I am going to have the surgery to remove the tumor or not. As of right now it is not growing just causing pain. My husband and I are going to do some praying before making that decision. I have shared my story not for attention or to complain but to give encouragement. Whether you have something similar to me or you are having a bad day. I want everyone to know with God and a good support system you can accomplish anything. When the world is against you keep fighting. Do not let anything hold you back from accomplishing your dreams. I am opening up for the first time in hopes of telling people they are not alone. If I can help you in anyway message me. I wanted to tell all of you that you can do it. While fighting my disease I have managed to graduate college with a Bachelor of Science in Finance, an MBA, and a teaching certificate. I married a wonderful man who supports me completely. I work as a teacher at the high school I attended. I own a small business and I am trying my hand at blogging. If I can do it I know you all can. Thanks for listening!!!
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Jami Babb
I am a teacher by day and a boutique owner and blogger by night. Join me on all my adventures. Archives
December 2017
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