Neuro-what?

Last week, I talked about one aspect of the 180-lb tumor story. But besides the Flight, Fight or Fright conundrum, I was also struck by something else:

Of the 200+ articles I found on the web, my trusty Google News search suggests that only eight actually named NF as the cause of the tumor. 8. Out of more than 220. The rest merely referred to a “rare genetic disorder.” What’s more concerning is this: the CEO of the hospital where the operation took place told CNN that it was the same disease as that of “The Elephant Man.” Except the latest research suggests that Joseph Merrick, popularly known as “The Elephant Man,” is suspected of having Proteus Syndrome – a completely unrelated disease. If the medical community doesn’t even understand NF, and the press doesn’t report on it when provided an opportunity to educate, it’s no wonder that so few people have ever heard of the condition.

Continue reading

Keeping Perspective: Flight, Fright or Fight

For you news junkies out there, you may have heard about the 180-lb tumor that was removed from a 32-year-old Vietnamese man, Nguyen Duy Hai, in Ho Chi Minh City. If you saw it, you probably had an “oh my god,” “gross,” “wow that’s incredible” or a “can you imagine?” moment. I’ve had those moments too. I’m embarrassed to admit that I’ve also had the “I’m so glad it isn’t me” reaction. I think all these reactions are perfectly normal. It’s one way that we remind ourselves that despite all our complaints, there are still many, many people who have it worse than we do in some way, shape or form.

But for me, this story was an unpleasant reminder of what could happen to my little girl. Just six short weeks ago, I talked about the struggle for calm in the face of my daughter’s neurofibromatosis (NF type 1). Because it turns out that this Vietnamese man also has NF1.

Continue reading

NF? What NF?

A couple weeks ago, I talked a bit about the NF Symposium I attended a few weekends ago and how I was struck by the conflicting agendas of the program participants. That was the cerebral side of things. In this post, I’ll be talking about the emotional aspects.

Continue reading

It’s all skin deep

.. At least, that’s what I’m hoping. Something happened last week that absolutely broke my heart. As you may know, K has a condition called Neurofibromatosis or NF (NF1 to be precise). While getting dressed one morning, K happened to notice one of her many café au lait spots.

Continue reading

Walking Munchkin!

We’re still in the midst of our short commercial break, but we are taking a quick moment for station identification… And to show you a video of my munchkin walking!!!
Continue reading

Early Intervention

As you know, K has a condition called Neurofibromatosis or NF1. One of the most common side effects of the condition is a predisposition toward learning disabilities or delays. A few months ago, one of her day care teachers hesitatingly suggested that we might want to consider looking into Early Intervention for K because at the time she still wasn’t crawling, and she was almost a year old. I meant to contact them, but frankly just never got around to it. Continue reading

An Introduction to Neurofibromatosis

Through the wonders of Facebook and Twitter, a great many of our friends and family know that we have spent a fair amount of time at doctors and in hospitals over the years. For many reasons, not just the one I outline in this blog post, I’m extremely thankful that we live in a city like Boston with such a wealth of medical talent and that we have health insurance. This blog will be a bit longer just to give a little background.

Continue reading