The "No-Rules" Rules for Neurofibromatosis

When I went to Toronto, I had the privilege to meet Patricia Birch.  She is a research scientist at the University of British Columbia, in Vancouver.

She talked about the controversial topics, that no one really wants to hear.  The "no-rules" rules that Neurofibromatosis can, and oftentimes does take.

I know for me and my family, we have broken all the rules that  NF was supposed to have.  There is NO DOCTOR, no matter how much training they have, that can predict the course that Neurofibromatosis will take.

From things like Drs. not scanning for optic gliomas, after the age of 8...because "supposedly" these tumors don't present themselves after a child is 8.  My son is 13 years old, and had "clear" MRI's until his last one a few months ago, that not only showed a brand new optic glioma, but also plexiform tumors along his spine.

I have had to push for yearly MRI's and fight for insurance to approve them, because of the doctors feeling that it is unnecessary.  I am glad that I have pushed back, because without the MRI's we would not know, about the silent tumors that are very much a part of my children's brains, not only with my 13 yr old son, but also with my 15 yr old daughter, who is now receiving chemotherapy for tumors that had no obvious symptoms.

Who will fight for your children, if you don't?

I know that it's not easy to stand up to your doctor.  I know that every time I go into the doctors office, I will face a wall, that is not easy to climb.  The doctor is the one with all this education and training...who I am to question them?

But what I have learned, is that doctors do not know everything.  We need to go to them, and respectfully inform them about our concerns.  Make them hear us.  Don't take no for an answer, if what you are dealing with gets pushed aside.  YOU ARE WORTH MORE, than to just be dismissed.

I get the craziest looks from doctors, when I bring up concerns that I notice with my NF1 children.  At our 6 month dental cleaning, I had all SIX kids in dental chairs, and I asked the dentist if she knew of the connection between Neurofibromatosis and dental issues.

Her eyes squinted and she had this look of, "YOU ARE NUTS LADY!"  I went on to explain how I had participated in an NF study proved that people with NF, have a higher rate of decay...and a change in the boney structures of their jaws.

Now I am sure, that if one wanted, they could blame EVERYTHING wrong with their lives on Neurofibromatosis....but there ARE studies that prove that EVERY cell in the body is affected by NF, meaning NF can disrupt the growth of any part of the body. 

The point of this blog post is not to scare you into believing that every ache, every growth, every cavity is because of NF....But instead to inform you to just be aware of your body...of your child's body....and if something isn't right, get your doctor to thoroughly check it out,and send you to the proper place to get it treated.

Don't buy into a set of rules, because life itself, doesn't have rules.

And, several of the lesser known manifestations CAN be treated, before they become problematic.  No one can predict who will develop what, but an awareness has the potential to help people understand to stand up and be heard, when something isn't right!  

and of course
THRIVE ON!