Monday, January 11, 2010

Importance of Participating in Research

When I was first diagnosed with Neurofibromatosis, the last thing on my mind was to tell the world about it. I, in fact did the opposite. I did every thing I could to hide from the world, and hide, as long as possible, my NF.

But you can only run for so long, before reality and the truth catches up with you...and it did for me, in a big way.

It took a lot for me to accept the reality of having to deal with having this life altering disorder. I didn't like it...I didn't want it...And I didn't think it was fair! But after I chose to break down the walls of denial, and build up some power to fight back, I began to accept it, and even embrace it.

When my children began showing signs of issues, I began devouring as much information as possible about Neurofibromatosis. I impressed and sometimes scared my husband with how much information I was taking in.

I started support groups and websites, I even enlisted in on-line surveys and signed up for NF studies that took me across the country. I wanted to stand up and shout to the world that I had NF, and then teach them about it!

Doing all of this has help me grasp my reality, and the reality for my children. I have learned so much and can now be an advocate for them, and possibly for many others, who are struggling to accept their own reality.

NF does not have to be the end. I know that the pain it causes can be extreme and in many forms, but you must fight through it. Finding something other than your own pain to focus on has truly helped me get through this....and one of the best things I have done, so far was to participate in research and since NF is so broad, there are many areas that Drs are very interested in.

Last July, my brother and I took part in a study about NF variability. We were treated like royalty, while we underwent 3 days of MRI's, blood draws, dental consults, photos, imagry and one on one genetic counseling! Try getting all that, with your insurance coverage!

It was amazing, the doctors who were doing the study truly cared about the person in the study, not just the results. I finally found a place that understood everything I was trying to communicate, for so many years. It was like -- I found someone who spoke my language!

Six months after that study, I was invited (yes invited) back to have surgery performed by a well known plastic surgeon. (Tummy tucks not included this time...darn) I stayed 6 nights this time and ended up meeting a woman who I will be life long friends with.

So many good things have come from participating in NF research and reaching out to others. I hope to be a part of future research and do plan on getting my children involved.
Please, reach out, get involved!
for more information, or contact me directly at

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