My name is Natasha Burgess Johnson and I am a recently married snowboard coach from Dartmouth, NS. I enjoy snowboarding, baseball, skateboarding, gardening and my husband and I are very often under major house construction (a shared hobby).
My journey with NF began in high school when the strange bump on my leg started to grow large enough to be a concern. After having two ‘bumps’ removed, Doctors were surprised to find they were Schwannoma’s, ‘A common thing’, I was told. A few years later, I suddenly had severe shin pain again and was told a dozen things it could be. Finally after many mis-directed tests, I found out I had a whole shin full of schwannoma’s. Now many surgeries and years later, I finally know more about Schwannomatosis and look forward to helping increase the awareness of all forms of NF to decrease diagnosis time and increase the quality of care given.
I can tell you from my own experiences what being in the hospital is like for a young child. From countless x-rays to dozens of MRI scans to constantly monitor the growth of the benign tumors all throughout my body, to having major spinal fusion surgery in 2011, the IWK children’s hospital has become kind of a second home for me.
I have a genetic condition called Neurofibromatosis which was passed down to me by my mother. A tumor growing on the side of my spine began to cause my spine to grow crooked. Three days after my 14th birthday I went into the ten hour corrective surgery to straighten the sixty-eight degree curve in my spine. My spine was to be supported by two titanium rods screwed into my spine to prevent it from curving any further. Side effects of having Neurofibromatosis range from abnormally small bones to learning disabilities. My doctor was unable to fit both rods on my spine because of my small bones, which are smaller than those of a five year old child. This unexpected setback left me in a full torso back brace for six months after surgery. But hey, how may kids can say they grew and inch and a half over night?
My NF hero is my mother. My mother is an incredible woman who has also fought with NF her whole life. Almost everyone in the world can say they have good days and bad days, but for people with NF those bad days can be more than bad, and your feelings can drag you so low it is very hard to pick yourself back up. Feeling slow, tired and useless to feeling ugly, deformed and unwanted are not uncommon feelings for someone with NF, and my mother and I have felt them all. When I am at my worst my mother is the only one who can actually understand me and what I am going through. She picks me up, and tells me I am beautiful, even when I still don’t think I am. On my worst days my mom raises me up higher than I ever am on my best days, and she makes me feel loved, and wanted.
To me, NF is not just a condition I inherited from my mother. It is the condition that brings us closer together as mother and daughter and the condition that brings us closer to other people all over the world who fight through NF every day.
We may have NF, but NF does not have us.
Glen Margaret, NS
My journey with neurofibromatosis began when I was 27. A series of surgeries and pathologies lead my specialists to first diagnose me with schwannomatosis. A year or so later with a few more surgeries under my belt, my diagnosis changed to neurofibromatosis type 2 after geneticists were able to identify the genetic mutation responsible for my condition. My experience within the health care system has been positive – but it’s abundantly clear that we need to raise awareness. I’m a mother to two energetic little boys, and together with my husband we live in the woods in an off-grid home. I’m very used to going full tilt all the time; used to out-running my kids and swimming, hiking, jumping, playing until my head hits the pillow at night. NF2 has robbed me of that, because currently, the only “treatment” is medication and operation – both of which turn my world upside down and have slowed me down enormously. Being in chronic (often excruciating) pain is exhausting to say the least.
I founded NFSNS in 2014 as a way to make my diagnosis a positive part of my life. My hopes for NFSNS and the future of NF in general are to raise awareness both within the general public and the medical community to attract interest to research treatment, symptoms, and even a cure while also making for faster diagnosis and better quality of care. Through NFSNS I hope to help bring the NF community of Nova Scotia together and create an environment where we can congregate to support each other and rely on for current, accurate information on the condition and any current trials or research breakthroughs. Through our fundraising, I hope to continue to be able to sponsor youth to attend special summer camps to help them thrive and grow despite their diagnosis.
I might be hurting and lumpy – but I am beyond excited about this challenge and motivated to encourage change in NF care and support.
Formerly of Nictaux Falls, NS (now living in Puslinch, ON)
© 2014 Neurofibromatosis Society of Nova Scotia. All rights reserved.