Friday, July 04, 2008

This is why I hate medical "reporting."

A medical story being pimped on the local news:

"Neurofibromatosis: the rare genetic disorder that may affect your family!"

Arrrrgh. "Rare" and "may" are the keywords here.

The incidence of NF, depending on the type, is either 1 in 4000 or 1 in 50,000 (there are several different types). According to this website, about 100,000 people in the U.S. are affected. (Which, yeah, is still "rare" considering there are 300 million in the U.S.)

However - the disease is almost always inherited (only vanishingly rarely is it a mutation). It is an autosomal dominant. So people with NF in their families ALREADY KNOW ABOUT IT. A child affected with NF will *almost always* have a parent with it.

I HATE the way my local news channel reports this stuff. I can almost hear the scare-waves going out from the set. (I wonder how many families got worried by that header and started calling their doctors).

How would I present the story? I don't even know. If I were a news director, I'd probably only choose to run the story if (a) there was new information out on treatment/surgery for it or (b) there happened to be a couple families in the area we knew were affected by it, had school-aged children, and wanted to educate the public so that the families weren't shunned. (And even then, I'm not entirely sure that's part of the mission of a news program).

But I hate the trend of Scare Reporting! that comes with medical news. This often seems to center around stuff you eat or drink (just this morning they were telling women to "put down the coffee!" for some reason), or childhood pastimes that are normally safe but maybe one out of 10,000,000 times have some kind of injury ("Next: Killer Playground Slides!"), or talking about how some perhaps-unavoidable condition is going to make you Die Real Soon! ("How having blue eyes increases your risk of Deadly Eye Cancer!").

I'm sure part of it is that without larding the local news with these stories - and their stupid "Relationship Corner" and their recipe-segment and all that junk - the local news would be about 15 minutes long, rather than the 2 hours they stretch it out to every morning. (5 am to 7 am).

And you know? I'm not convinced that 15 minutes of news, and an hour-45 of something else (maybe show old Bugs Bunny cartoons?) would be such a bad thing.


Anonymous said...

Not sure where you get your information but I'm a parent with 2young adult children with NF2. I've been in an online support group for most of their lives. I, myself diagnosed one family with the disease! I could tell you about dozens of people with NF2 due to genetic mutation, and a lot of others whose families DID NOT know until the child was diagnosed that they had NF2 in the family even though one of the parents had it! People with NF2 are so frequently misdiagnosed or undiagnosed that it may take years before they stumble across a doctor who actually figures out what they have. If the NF is an aggressive case, and the family has found good doctors, they MAY know they have it. The family I diagnosed with NF2 had never been told they had it, though a mother, daughter, and grandmother all had it, had had NF2 related surgeries, and their doctor knew. (I suggested they ask their doctor if they might have it and the doctor replied, "Of course you do!") He had somehow neglected to mention this to the patients! Symptoms of NF1 and NF2 can be subtle at first - and in some cases may never even become severe enough to cause investigation. Diagnosis may be made long after symptoms have appeared for a variety of reasons including but not limited to: uninformed doctors, patients with annoying but not earth-shaking symptoms, children with severe cases with a parent - and maybe even a grandparent and great-grandparent - with a very mild
While I agree that the news media likes to blow things out of proportion "If it bleeds, it leads", too many of your statements are not factual. NF1 occurs in 1 of 3000 cases. NF2 - 1 in 33,000 to 40,000 (CTF says 1 in 25,000) Schwannomatosis-the new kid on the block, 1 in about 40,000 For more information, go to and see the information by the Children's Tumor Foundation.

Josh Humphries said...

You said that NF can have a 1 in 4000 occurrence rate. NF-1 has around a 1 in 3000 to 1 in 2500 occurrence rate globally and only really has a 1 in 4000 to 1 in 3000 rate in the US; that's because there are plenty of American doctors (even *NEUROLOGISTS*) who don't even know what it looks like.

Why don't American doctors pick up on it? Because it seems they're only taught how to pick up on "sexy" disorders like Creutzfeldt-Jakob syndrome.

I've even had doctors who are in their 60s stare at me slackjawed and say things like "I've never heard of it" or "Last time I saw this was in med school!"

candice patterson said...

I don't watch local news, I refer to it as "Fear Factor." I agree with you that the media's use of fear tactics is not helpful in any situation. As a person who was born with NF and undergone 22 surgeries to treat my NF and have struggled to maintain my vision, hearing and sanity, I would prefer an informative story on the subject also. My name is Candice Patterson, I race in triathlons for the Children's Tumor Foundation and speak publically about the disease to bring awareness and teach children how to overcome adiversity.
1/3000 is actually a large number of births affected by this disease. It's greater than Huningtons and Cystic Fibrosis, combined. However there are greater medical advances in both of those disorders. My guess is that you had never heard of NF until the news story. Perhaps the story could have been handled better. But when we live in an age where we have a disease with no treatment other than surgical removal of tumors which causes disfigurement, paralysis, deafness, blindness and sometimes death to patients, you can understand our desire to have alternative treatments. NF is more prevelant than half of the birth defects that are automatically screened for during pregnancy. We've had the capability to screen for NF since 1988, and it's only done if the parents are already aware of NF. Most children are not diagnosed with NF until they present symptoms, they could be adolescents. NF varies so much that parents often pass the disorder to children never knowing they carry the gene. As a patient with NF, as an athlete with NF, and as an advocate for NF, I am sorry to hear that the information in the news report was not helpful to you.
But please don't think that this disease, because it is not an epidemic, isn't affecting thousands of lives. I work in medicine, I know we can do better. If you have the time, stop by my website. There are no scare tactics, just the truth about my life with NF. The surgery journal archives offers photos of myself as I go through surgeries and healing working to maintain a normal life. The thing is, my life is extraordinary.
Good luck Ricki.