My name is Tera and I am 46 years old. I was diagnosed with Neurofibromatosis at the age of 12 and it was the result of a spontaneous mutation of the gene. I often tell people that having NF type 1 is a blessing and a curse for me. People may find it odd that someone with a genetic disorder with NO CURE and NO EFFECTIVE treatment sees it at a blessing, but for me it has been a blessing in many ways. The first being my “extended” family. It is extremely difficult to be the only person in my family with NF. In fact, I had never met another person with NF until I went to the family camp that the Texas NF Foundation holds each September. It is the one time of year that I can truly feel comfortable in my own skin, worry about the stares of others and a time when I try to inspire the next generation to persevere through the barriers NF may cause.
Having NF has created challenges in my life. I have a severe case of scoliosis which has required multiple surgeries. Unfortunately, the doctors have been unable to keep my spine straight. In fact it continues to curve. Because of this I have chronic pain as well as a compressed nerve in my spine that causes pain in other parts of body. It makes walking and even driving my car difficult. There are many days that I wake up and do not want to get out of bed because the pain is so bad. Then, there are of course the extremely large plexiform tumors that are growing around my hips, buttocks and groin area. I have had two surgeries in an attempt to decrease the size, the surgery helped in the short term but these tumors are continuing to grow. I often have pain in these tumors and due to their size it can be difficult to keep the layers between them properly clean. If I get “bumped” in the tumor it will cause pain. The only way to describe the pain it like hitting your funny bone. It is also difficult to find clothing that fits appropriately.
Through all of the hard times and pain I still try very hard to maintain a normal life. I am married and work full time. I am also in college pursing my degree in history. I also love volunteering for any events related to raising awareness and money for research to end NF. It is part of my responsibility as someone with NF to spread the word that we not only need a cure but we deserve a cure. Is it fair to the parents of a newly diagnosed child to be told their child has a disorder with no cure? That there is no way to know how the child will be affected? That it is a progressive disorder that will possibly get worse as they get older? That the disorder can in some cases be terminal?
All I ask is that you take some time to put yourself in the shoes or an adult with NF or a parent whose child has NF. How would it make you feel? What would you do and how would you help to find a cure?