But in remembrance of this very special day for me, I decided to post the very first "note" I posted on Facebook about my condition. It's kind of crazy to see how far I've come! So here it is people!
So this weekend I had the fantastic opportunity to meet some very inspirational people at a Neurofibromatosis seminar. These people really made me stop and think that I shouldn't be afraid to be who I really am.
When I was 3 years old, I was diagnosed with a genetic disorder called Neurofibromatosis Type 1, or NF-1 for short. For those of you who don’t know what it is, it’s a genetic disorder that affects chromosome 17. This chromosome is in charge of preventing the growth of tumors in your body. So, in easy terms, tumors can grow uncontrollably anywhere in my body. If you wan to know more about this disorder, go to http://kidshealth.org/parent/
So, more about me….. NF didn’t really start affecting my life until I was about 13 years old. In the summer before grade 8, I had a large birthmark removed off my back. It was screened for cancer, and thank God the results came back negative. My pediatrician decided that I should have an MRI of my brain, because people who have NF can develop tumors on their brains, spinal cords, hearts etc. I was terrified. After about 2 weeks, my test results came back. They had found a small growth located near the hypothalamus (which is right in the middle of your brain). This growth was monitored (and still is monitored) and lucky for me, it isn’t cancerous, and I don’t need any surgery to remove it.
After that, I started experiencing awful back pain. It persisted for about four months until we decided to get it checked out. I had spinal scans, and they determined that I had an abnormal curve in my spine (which is called scoliosis).
After all of that, I didn’t think that things could get any worse, that I could possibly have anything else wrong with me. Boy was I ever wrong! I started getting awful headaches, and they would start in the morning, and last all day long. At first, Advil would work to take away the pain, but after a while I was unable to get any type of relief. In the past two and a half years, I’ve seen two neurologists and two neurosurgeons about my chronic headaches. The growth in my brain is not causing the headaches, and I’ve tried countless medications. Nothing has worked for me. I had a spinal tap last year to see if there was pressure in my brain, the results came back normal. I even tried IV medications this summer, which didn’t work either.
Also, last summer I was diagnosed with a disorder called growth hormone deficiency. For those of you who know me well, that’s the reason I’m so short. For that, I’m required to inject myself 6 days a week with the human growth hormone.(Now I am off the injections as it caused some growths to appear in my arms and legs).
On top of that all, they also found two tumors in my pelvis this summer during a routine MRI. The doctors are still unsure about what they are, so they have held off treatment at this point.
My point of this note is NOT to get sympathy. All I want is to spread the word about NF. I’m betting about 90% of you don’t know what it is. You can think of me as a “freak” if you want, but I don’t care anymore. Nobody has figured out this about me, and up until now I’ve been treated normally. I’m not contagious, I’m not defective. I’m a human being like everyone else who is only looking for acceptance. As one brave young girl said this weekend at the seminar, " If you don't like the way I look, don't look at me."
I have been given the opportunity of a life time to go to the Mayo Clinic is Rochester Minnesota this summer to be looked at by some of the best doctors in the world. Hopefully they can offer me some advice on how to deal with some of the conditions I have.
So, if anyone has question, don’t hesitate to ask. Message me if you want, or post them on my wall.
Again, thank you guys for your continued support, which has helped me grow and mature into the person that I am today!