Letter: May is Neurofibromatosis Awareness Month
The month of May is Neurofibromatosis Awareness Month. When I was 3 years old, I was diagnosed with the disorder, and it was confirmed via blood work when I was 8.
The NF disorders are more common than cystic fibrosis, hereditary muscular dystrophy, Huntington's Disease and Tay Sachs combined. However, so few people have actually heard of them.
As a result of neurofibromatosis, I've had multiple painful surgeries. I am considered low vision. I have several learning disabilities. I've honestly have never known what it's like to live without pain. Every time a new health scare comes up, there's always the potential it is a tumor. Neurofibromatosis is unpredictable. Some people are barely affected by it, and in other people it impacts their lives profoundly. I fall somewhere in the middle.
Neurofibromatosis is genetic, meaning I was born with it. I inherited from my mother, although it can occur as a sporadic gene mutation. You cannot catch it from someone else, although anyone can be born with it. There is currently no cure and no treatment; however, the various complications can be treated.
In both the state of North Dakota and the City of Fargo, it has been officially declared as Neurofibromatosis Awareness Month. May 17 is Neurofibromatosis Awareness day, and I'd like as many people to be aware of this disorder as possible.
With awareness comes hope, with hope comes a cure. But even though there is currently no cure, that doesn't mean there isn't any hope. I hope by raising awareness, perhaps we can move closer to a cure for me and the millions of others living with this disorder.
Ruth lives in Fargo.