My name is Lynette, and I was born in Gosford almost 40 years ago but moved to Brisbane with my family in 2011.
When I was a baby, my mother noticed a dirt-like mark under my arm that she tried to wash off, but when it did not clear she made a doctor’s appointment to see what it was. He brushed it off as a birthmark and nothing more, so when I started to develop more over the years, she assumed it was much of the same.
As a child, I was diagnosed with an intellectual disability and was enrolled in a special education class, but this was never linked to the birthmarks or any other signs of the condition. We were in the dark as to why I had so many problems learning.
I started to suffer hearing loss in both ears when I was 9. I had severe sensorineural hearing loss in my left ear and mild-profound sensorineural hearing loss in my right ear. My 16-year-old daughter has also been diagnosed with this in her left ear.
I also had a lot of bowel problems along with severe tummy pain growing up. They did a colonoscopy when I was about 10 but once again, they were unable to find a reason for my problems. When I was 17, I had a benign cyst removed from my right arm, but there was no link made between any of these symptoms.
I have also suffered from severe headaches for years, which no pain killer could relieve. It feels like there is huge pressure on the side of my head and I simply have to ride it out. I feel nauseous from the pain and cannot function. My family needs to take over running the household during these times as any sudden movement causes the ringing in my ears and pain in my head to go from severe, to out of this world painful.
I have mentioned these headaches many times to my doctors over the years and they kept putting it down to my high blood pressure. However, once my son was diagnosed with NF, all the pieces of the puzzle started to fall into place.
Jacob started to experience eye problems when he was 13. An optometrist said that there was something on his optic nerve and suggested we make an appointment with a paediatrician. He mentioned something about NF1 and ordered an MRI.
We wish we had never heard the term Neurofibromatosis.