Ed note: During May, NF Awareness Month, we are posting stories of individuals and families living with and overcoming the challenges of NF. If you’d like your story to be featured please email ggleeson@ctf.org with an article of approximately 500 words, and your picture (or your family’s picture). If you like this story please share it with your friends and family via email, Facebook, Twitter etc. Together we can do wonderful things to promote NF awareness and research, thank you for your commitment to the cause.
Hi! My name is Diane, and I have Neurofibromatosis 1 (NF1). Growing up, I had no idea that I had NF, let alone heard of it! All I knew and saw was that I had a ton of “birthmarks” scattered throughout my body, some even looked like little freckles tossed across my neck, armpit, groin area. I hated it and tried in vain to cover up as much as them as I could with clothing. As much as I loved summer I also dreaded it since it meant tank tops, short and bathing suits.
After a while I started to notice that I was getting these strange bumps all over my body, some hurt, thankfully the majority of them did not. I didn’t really think to go to the doctor since they were mostly painless, and I figured my mom would claim it was misguided pimples and to eat more vegetables and lay off the junk food.
Obviously I had gone to the doctors for other ailments, but not once did they investigate my “spots or bumps”, thus I also wrote off that nothing was wrong.
It was in 2007 at age 29, that my doctor suspected that I may have NF. Like everyone else, first hearing about NF, I was thinking,..neuro-whatta????
When I got home, I looked up Neurofibromatosis…the symptoms matched mine, the birthmarks I learned are café-au-lait spots, the spots were neurofibromas, I am short(er) which is another trademark, the hypertension as well….though I think my HBP is also due to genetics, as well as diet and stress.
Then I clicked on “images”, my…jaw…dropped. The images that initially popped out to me did NOT resemble me. But then I saw the other images that seemed to fade behind the ones I did notice—those looked like me. I was stunned, I was not sure if my own NF would progress like the ones I was shocked by,…and I’ll admit I did cry.
To know for certain that I had NF my doctor had me get an MRI and see an ophthalmologist. All signs pointed to in fact having NF1.
Wanting to find other individuals who had the same disorder (NOT disease-after all you can’t catch NF by hanging out with me), I poked around the web and found www.inspire.com and the discussion forums, and made a few friends there. Then I decided to try www.facebook.com to see if they had any NF, groups, I honestly didn’t think I’d find anything, I found that there were groups after groups after groups. I was ecstatic! There were other people like me out there! Even more comforting, some were close by!! I quickly made friends with other NF’ers all over the world, and I furthered my knowledge and understanding of the complex disorder.
I underwent two separate surgeries to have a total of 10 tumors removed from my body. I was very fortunate that none of them were cancerous. As the time goes by the scars fade away. But on the flip side my body will and does create more tumors.
Last year I was fortunate to stumble upon a clinical trial for NF1 at UCLA [for more on lovastatin and NF, please click here, to learn about NF-related clinical trials please click here]. It was a double blind study to see Lovastatin vs. a placebo aided in improved cognition. The trial consisted of me taking a pill everyday and then going for occasional follow ups. They conducted a cognition test at the beginning of the trial and at the end of the trial. I successfully completed the trial from beginning to end—I even endured the MRI two more times. I won’t know for a few years what I was actually taking, the actual drug or the placebo. I thankfully rarely suffer from side effects of medications.
For the most part, yes I have NF, but it doesn’t have me…but I am human after all and there are times that I do feel it has me. I still shy away from certain clothing and/or materials because all I see are the tumors poking through screaming, “Look at me! Look at me!!” Granted, I’m not cloaked in clothing from neck to wrist to ankles anymore, but still, having the freedom to buy anything off the rack would be bliss.
On the dating level, I question if the guys will care that I’m “flawed”. When do I mention that I have it?
On a side note: I had lost my job about three years back, and was unemployed for about 6 months, with all that “free time” I gained about 10-15 pounds. As much as it sucked gaining that weight, I felt that with the weight gain, I’d rather be rejected for being fat vs. the NF. After all, weight gain I can control (with A LOT of effort) vs. the NF I cannot (no matter how much effort I put into it).
I’ve dated on and off through the years but nothing that has been serious. None of the guys seemed to have an issue with the “spots and bumps”, or at least never addressed them to me directly. As the years go on though, I have more tumors popping up (and scars from surgeries), so there’s always a little voice in the back of my head…will they care that I have NF?
But those pessimistic thoughts are rare, and I despise having the “Eeyore” complex to life. There are so many people out there in the world that have it worse than I do, NF or no NF. I much rather view my life as the martini glass half full—because the part that I drank has been pretty darn good.
