Yes May is NF Awareness month, but in my life and others living with or caring for someone who has NF it is a 365 day a year awareness.
Whether watching your NF Child giving their all to pass a test and come to find out they fail it and the look of disappointment in their eyes of feeling like a failure because NF Causes learning disabilities and anxiety. Watching children in your neighborhood ride their bikes and invite your child to ride but at 11 are to embarrassed to ride with training wheels because of her age but NF and balance issues go hand in hand. To give your child high blood pressure meds, vitamins supplements, and anxiety meds daily because of NF. Meal time being a nightmare because of sensory and texture issues. These are the easiest part sometimes.
Its the endless doctor appoints, worrying about MRI results (scanxiety) endless gas in your car to get them back and forth to lots and lots of Dr’s not just the pediatrician. Tumors can pop up on any nerve at anytime. And the list goes on… Then as you scroll through your newsfeed and see all your NF Family friends post of pain, chemo, surgery, medical billing, and list goes on. THAT IS NF AWARENESS DAILY. So if you or someone you know and love has NF PLEASE help by getting involved, donating and being a part of the NF Community and LETS FIND A CURE.