My name is Nicole and I want to share with you my story.  For most of you that know me, you’ll know that i´m sporty, and i never do things by halves. If i have to cycle 100 km, i´ll do 200, if i have to run 10 km i´ll run 20.  I love sports, and have been an endurance athlete since I was in my early teens always pushing myself to the max. Its who I am.  In 2010 a massage therapist found a lump in my thigh, which was diagnosed as aggressive fibramatosis, or a desmoid tumor.  This marked the beginning of a long journey that I´m still on.  I’ve had two surgeries so far, which is nothing compared to some, and have taken some rather unfavourable medications with not so pleasant side effects.  For the past two years the doctors have employed the ¨watch and wait method for my tumor because its in a fairly safe location.  However that time has ended as the tumor is now growing again, and is starting to invade my knee joint.  Hearing doctors say: “we need to intervene now if we want to save your leg” is harrowing. This is major for me.  I have now lost range of motion which means cycling and running are now hard for me.  Even though this is devastating for me as an athlete, i feel I am so lucky compared to some people.  These tumors are aggressive and nasty.   I am part of a community and support group of people battling these tumors, and my heart weeps for them.  I hear about them losing limbs, dying.  I know a woman with 35 tumors in her body.  Its awful.  People tend to say, ¨at least its not malignant” (meaning it does not spread and destroy tissue).  Instead it slowly destroys your life!  The reason I´m sharing my story with you is because I want to raise awareness about Desmoids so that we can get funding for research and treatments.   Its a fairly rare disease, so it does not attract the attention like some of the more common diseases.  But we need help too! The Desmoid Tumor foundation is our hope, and is a shining light in the darkness for us! If you can, please share my story, and if you want to donate to the Desmoid Tumor Foundation, all the money I raise is going to them.  

Starting on July 5 and continuing to August 5, I will run 10 km every day until August 5th, where I will do an Olympic (hopefully not my last) triathlon.  For those of you who know me well will think this is peanuts for me.  Its different now though.  Every step I take shoots pain throughout my entire body, being in the cold water causes the nerves around my tumor to flare and ache, every time i push the pedal on the bike it hurts.  But I will beat this.   If you want to join me in solidarity, on August 5th, run, swim, or bike, use the hashtag #desmoidawareness and post on instagram, Facebook or youtube.  Help us bring awareness to this disease.