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.
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.
…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.