Hey everyone, if I could please have a moment of your time.......I would like you to know that May is Neurofibromatosis Awareness Month. Please check this information out. I have NF1. It is the condition responsible for all my health problems & will ultimately continue to do what it can do with me. No 2 cases are alike & it effects us all so diversely & differently. It can be mild & not so obvious & it can be disastrous.
NF1 is a progressive disease; that is, it tends to get worse with age. There is no cure for NF1. It's important for people with NF1 to regularly see their doctor, so that any complications of the disease can be picked up early and the symptoms of these complications can be treated.
About 8% of people afflicted with NF1 face malignancies, so it is very rare to see cancerous transformations in NF tumours. (Such was not the case for me. I have been grappling with neurofibrosarcoma, for just over fifteen years!)
So when I find myself on the Why Me side of downtown,
I remind myself that it’s crucial for me to bear down,
My mission is humbling, but it is the least I can do,
The more people I tell, the more facts to accrue,
I’ve kept things under my hat for far too darn long,
I’m here to sing & inform with my song,
I’m not trying to be imposing, intrusive or in your face,
It’s just that I’m trying to say this with a wee touch of grace,
I’ll continue to educate & I won’t give up trying,
It’s only the facts that I have underlying.
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