Hello, my name is Tahnee, and I am honored to be asked to be a Group Leader for this group.

Neurofibromatosis is near & dear to my heart because my youngest daughter, Ashley, has NF1. I say, "near & dear" because I try not to look at it as a problem, or that something is 'wrong'. There is nothing 'wrong' with my child. She is 'perfect' in my eyes. Her condition makes her all the more "unique & special" and deserving of extra compassion & understanding. It requires for me, as her mother, to do my best to be strong when she cannot. To be her guardian, her protector, and most importantly, her "advocate". I stress this to others as well. Be your own cheerleader! We often must fight to be heard and not just heard, but listened to.

No one can know what path NF will follow, when concerns will arise, or battles will begin. NF is a day by day condition, like many, and must be heeded as such. Many people can go through life without much troubles arising from their NF, while others truly suffer from it. Most, fall somewhere in between. My daughter has had her share of turmoil from Neurofibromatosis. The last time we counted, she had around 100 CALS (cafe au lait spots), these generally do not pose risk, although tumors can grow beneath them. The biggest concern is preventing self-consciousness and preserving positive self-esteem. Ashley also has three brain tumors. Two of them are her bilateral optic nerve gliomas, which are benign tumors on both of her eyes. These tumors, while benign, are still considered what they refer to as 'semi' malignant, not because they are cancerous, but because they threaten her eyesight, and pose the risk of a permanent disability, being blindness or even partial blindness. So far so good, but they continue to give us scares from time to time. Her third tumor is in the form of a cyst on top of her cerebral mass that, if it expands, could pose risk to blocking off the flow of cerebral/spinal fluids.

While I am no expert, and certainly not a doctor, we have been through enough in our personal experience as well as friends' experiences, and I have researched enough, that I am sure I have something to offer in it. Be it support, advice, understanding... a shoulder to lean on when you are sad or an ear to chew on when you just need to vent.

As a Group Leader I will always do my best to help however I can. I am handy at researching, and I am passionate about it so if I can not readily assist with answers, I can usually find them. And, I am more than happy to help with that. I will also do my best to welcome each new member. I do have a great many of my own health "issues" (& I invite you to take a look at my profile and my diary entries, on any/all subjects, in order to familiarize yourself with me, if you would like to) so if I miss someone, please, please know it is an accidental oversight, and I do want to know you. I hope that doesn't happen, but in the event that it does, I would like to ask you to please contact me directly in a PM, and let me know. You are all important to me. Please feel free to contact me for anything and Godspeed on your journey.

(((BIG HUGS)))

Tahnee (aka beauty4ashes)