One

I've been hashing out the details of a new column with Len, seeing as the focus of it is on him. We wanted to let you in on how NF1 has changed our lives while at the same time providing some education regarding the disease in general.

So here we are.  That's my handsome guy over there, being his awesome goofy self.  I can't stop looking at those pictures and grinning like a fool in love.  Mostly because I am; a fool and crazy in love.

Let's review the basics:  NF1 is a disease; a genetic mutation on a single gene that leads to tumour growth along peripheral nerve endings.  Every peripheral nerve ending in Len's body has the potential for tumour growth.  There is a 1-3% chance that these slow-growing tumours can become malignant; twice a year Len goes for an MRIs to ensure that his tumours have not changed significantly.

Len's case seems fairly mild. He has a scoliosis, at least five large tumours along the length of his spine and another near his lung. There are also numerous fibromas on his limbs, torso and scalp.  In November 2007, two tumours were removed from the C1/C2 vertebrae.  A grouping of tumours in his brachial plexus (shoulder area) are the primary cause of chronic pain. 

A major change in Len's life since receiving a diagnosis of NF1 has been  medication. Since before May 2007 (when we started seeking answers) Len has not had a day without pain.  I can't count how many drugs he tried before the medical team realized it was NF1.  Neurogenic pain is treated with an aggression patients are grateful for; while it took nearly a year of trial and error, we are grateful for the current medication which leaves Len with manageable pain, not zero pain.  We rejoice in being able to say that there are now more good days than bad. God is good.