So I’m going to reblog my NF post, hoping more people will read it, and reblog it to raise awareness. If anyone has questions about it or whatever, feel free drop me an ask. I’m more than willing to talk and answer any and all questions :)
When I was a baby, I was diagnosed with a genetic disorder called Neurofibromatosis (NF). I have NF Type 1 (NF1). I will have it for the rest of my life, and there is no known cure or treatment method for this illness. NF can be inherited, but 30-50% of new cases are caused by spontaneous mutation, which means that anyone can get it. It is equally represented among genders, races, etc.NF1 is the most common of the NF-related diseases, the others being NF2 and schwannomatosis. People with NF frequently have to have MRIs, CAT Scans, and Xrays to keep tabs on the progression of the disease. I used to have scans done every 4 months, and the contrast used during the scans always made me sick. I’ve had MRIs, CAT scans, PET scans, and all sorts of other fun experiences with big, loud machinery. I’ve been doing this as long as I can remember. While some kids would consider being out of school for half a day a blessing, I remember just wanting to be normal, and not have to come in late or be picked up early in order to be poked, prodded, filled with nasty-tasting fluids to up the contrast, and then put in a machine that made me, someone without claustrophobia, claustrophobic. However, these scans are an effective way of catching new growths, and is a very important tool for monitoring NF. I’ll be going in for testing for the rest of my life.
NF1 causes tumors to grow on my nerves, darkened patches of skin called “cafe au lait” spots, lisch nodules on my eyes, among other problems. I have experienced severe abdominal pain for a long time due to a large plexiform tumor. Plexiform tumors are uncommon, and are usually large, dominate peripheral nerves, and can even cross tissue boundaries. They can also undergo malignant transformation, and become cancerous.
The plexiform I have is very large, and affects my bladder, my back, and my digestive tract. It presses on my bladder, so I can’t have large amounts of fluids, or I’ll literally overflow. I’ve also had issues with my bowels because of it, and for a long time was having a losing battle with my body over how it would handle food. I’d be constipated, then 20 minutes later, I’d be in and out of the bathroom for an hour with horrible diarrhea. There was no knowing what would be coming next.
Surgery is usually the only means of relieving these symptoms, and I have had surgery already to remove a large tumor. Debulking surgery, which involved removing parts of the tumor in order to reduce the size, are common. However, surgery isn’t always an option.
I hate how the plexiform I have makes me feel and look. It’s located towards the front of my body, and protrudes. Since it’s about the size of a large grapefruit it makes me look, at least to me, significantly larger than I am. I am part of a case study at the National Institutes of Health, and I inquired about having it surgically removed. It was not only causing me physical pain, but emotional pain as well. I found out a couple years ago that, because of the size and location of the tumor, getting pregnant would be incredibly unsafe and incredibly risky for me. It could result in severe problems for not only the baby, but it could possibly kill me. I was crushed. I had always hoped that one day, I’d have that dream life: Married, pretty house, garden out front, two kids, a pet, etc etc etc. But, in the end, not being able to have my own children isn’t the worst thing that could happen to a person. I can always adopt, and give a child a loving home with a loving family.
Another emotional blow was just the plexiform makes me look. No matter how I worked out or tried, it all seemed in vain to me, since even when I was 120 pounds, I still looked big. They told me that, because of the nerves the tumor is involved with, I would likely lose function in my legs if it were removed completely. In addition, surgery would affect the stability of the tumor, and would likely cause it to start growing all over again. This isn’t an option for me. The thought of never being able to walk again scares me, however childish it may seem (I know people who can’t walk, I admire how strong they are. I doubt I’d be able to deal with that). The thought of the tumor growing back after surgery, bigger and worse than before scares me more.
For a year, I was on an experimental treatment protocol to try to reduce the size of the plexiform. I was hoping it would shrink, and that I would soon look, well, normal. I was self-injecting peginterferon, a drug used in the treatment of hepatitis C+B and some cancers, into the subcutaneous layers of skin surrounding my stomach and my thighs. This was during my freshman year of college, and caused me all sorts of problems. Because the side-effects of the drug were flu-like symptoms, sleeping problems, loss of appetite, and nausea, it was very difficult for me to keep up with my coursework, and I fell severely behind. I ended up bombing my freshman year. In the end, there was no progress, and nothing had changed. I was taken off the protocol, and after a bumpy Sophomore year, I have finally gotten back on track and am succeeding in college. I’ve somewhat come to terms with the idea that I will never have a picturesque figure, and that I will never ever look as nice as some of my classmates. I know that inside, I am a good person, and in the end, that that is what matters. Plus, I’m no longer afraid of needles!
As much as it may seem that it sucks to be me, I don’t even have it hard. I have a mild case of NF1. NF1 can be debilitating, and can cause cosmetic and psychological issues. It can cause blindness, bone deformation, hearing loss, cancer, and developmental delays. Other people need the help that would come from research far more than I do, and it is with hope that spreading awareness will one day be able to help them that I am writing this message.
Thank you for reading this, and I hope that this has at least motivated you to do some research on your own to find out more about NF. A good place to start is at the website for The Children’s Tumor Foundation.
To everyone’s good health,