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A few months ago, a question was asked in the private Social Fabric community if anyone had Neurofibromatosis (NF). I think I responded in about 30 seconds. Despite that NF is more common than Cystic Fibrosis, I never hear anyone talking about it, let alone knowing what it is. I have NF-1.
You probably don’t know what NF is, am I right? Ok, first off, don’t Google yet. I don’t want you to freak out. Because chances are you will. So just do me a favor… Please. Just keep reading.
I’m going to be honest, writing this post was harder than I thought it would be, and I’ve probably started it a dozen times. It’s strange to write openly about a disorder I have that not many people know about, or know that I have.
In a nutshell, “Neurofibromatosis encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.” (The Children’s Tumor foundation website says it much better than I do) NF affects one in 3,000 people of all populations; there is no effective treatment or cure.
Sometimes disabilities/disorders are invisible, and with my NF, you might not know I have it, unless you know what to look for. I have NF because of a genetic mutation on chromosome 17, and many of the members of the family on my mom’s side have NF, although I am the only one who has been formally diagnosed.
I have nearly all of the traits of NF-1 – cafe au lait spots, lisch nodules, neurofibromas, skeletal abnormalities, freckling in my armpits and groin, and then of course the family history. NF-1 is related to my learning disabilities, scoliosis, bone defects (in particular, my right arm) and hypertension. On top of all that, I had an influx of NF symptoms while pregnant.
Since NF-1 is genetic, there is a 50% chance with each pregnancy for the child to receive the NF-1 gene. Two of my three children have probably NF-1. Sebby and Quincy seem to have very similar symptoms of NF as I do. Right now, my youngest, Edison. doesn’t show very many manifestations of it.
NF-1 has so many variations within the disorder, the severity and manifestations can vary greatly, even among family members. My symptoms or my children’s symptoms could change tomorrow, in a week, or remain the same. We have no way of knowing the when or if and that’s why research is so important.
May is NF Awareness Month and the time to create awareness, educate and understand NF, and all the ways you can help, whether it’s participating in a NF event, volunteering or simply educating yourself on how to make a difference for people whose lives are affected by this genetic disorder. The “I Know a Fighter” campaign is an opportunity to recognize the many ways the community pushes back against neurofibromatosis.
Later this month, my family and I will be flying to New York City to the Children’s Tumor Foundation offices to join the fight against NF.