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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.
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.
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.
Where Medical, Political and Educational Worlds Meet
…Or do I really mean “Collide”? On Sunday, Jamie and I attended the annual Neurofibromatosis Symposium conducted by Harvard’s Center for Neurofibromatosis and Allied Disorders (CNfAD). As many of you know, K was diagnosed with NF1 just a couple months after she was born. To date, her condition is relatively mild, and with luck it will remain so.
There is something strangely compelling about taking a peek into the health care sausage factory (I’m sure my buddy Paul could tell you a whole lot more on this front). At this Symposium, there was a microcosm of the health care industry. Physicians, clinicians, social workers, advocates, not-for-profit organizations, parents, patients, educators, lobbyists – with the exception of actual honest-to-goodness politicians – I think we had every category covered, with many people present who filled more than one of those roles. It’s hard to know exactly how many people attended, but at a shot in the dark guess, it was probably about 100 people.
Let’s accept as true that everyone there had an ultimate goal of helping people with NF. The manifestations of how best to reach that goal, on the other hand, varied widely.
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.
Healthcare today – Quantity over Quality?
Now you may have noticed that despite having threatened to do so when I first started this blog, my forays into the discussion of politics have been fairly minimal. There are a number of reasons for this: 1) I have a number of friends from various stages in my life who *gasp* aren’t liberals. Shocking, I know. And while I may disagree (often strongly, and occasionally vociferously) with their beliefs on any number of topics, I respect that their experiences and priorities/values have led them to different conclusions than mine have led me. Besides to be perfectly honest (because, you know, apparently I wasn’t being honest before), I find as I get older that I’m just not interested in getting into fights – or even loud disagreements – with people anymore. I’m not going to change your mind. You aren’t going to change mine. And frankly, my memory is crap so I usually forget all the great statistics I’ve read that back up my position. So there.
Thinking of you, Isabella
Today, my friend Isabella is undergoing some crazy scary stuff. I don’t want to share her story – it’s not my place – but I know that she believes in the power of good thoughts.
So even though you don’t know her or what she’s going through, can you all please just send lots of good thoughts (of good health and outcomes!) her way this morning? Thanks.
And Isabella – I’m sending you a heap of good vibes.
Gratitude – September 20, 2010
So I’ve been reading the book NurtureShock
Wow, what a week.
No seriously, WHAT A WEEK. I apologize for the graphical nature of this post. I encourage all non-parents to stop reading now. I wouldn’t want to scare you off.
When it rains…
So I saw my rheumatologist two weeks ago. A few of you have wondered why some of my posts a have been tagged “lupus” despite not mentioning lupus once. Over the past three years, I’ve been going to the rheumatologist to check up on my APS, but also because of what they categorized “lupus-like syndrome.” Read the rest of this entry
