(Repost from '03:) MacCulloch puts face on anonymous disease

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BioMechanics May 2003

EDITOR'S MEMO

MacCulloch puts face on anonymous disease

By: Jordana Bieze

http://www.biomech.com/db_area/archives/2003/0305.editorial.bio.shtml

Many of us can say the Internet has changed our lives, but Rick

Alber can say it more confidently than most. Without the Internet,

the former attorney might not be the guy who now runs the Ask Dr.

Science Web site and makes guest appearances as Dr. ROM on KSFO

radio. And when Alber's daughter Flannery was diagnosed with Charcot

Marie Tooth disease, the already difficult task of understanding

this complicated neuromuscular disorder would have been next to

impossible without the Internet.

Not only does the Internet allow Alber to access relevant abstracts

from the medical literature and occasionally full-text articles from

the Web sites of trade publications like BioMechanics, it also

allows him to interactively learn from others' experiences through

discussion groups like the one for members hosted by CMT

patient Gretchen Glick (/group//).

Although CMT affects more than two million people worldwide, public

awareness of CMT-even with the help of the Internet-has been

limited. The name of the disorder alone is confusing enough, making

one wonder how codiscoverer Henry Tooth could have overlooked

the possibility of future generations mistakenly inferring that the

condition had something to do with teeth. And the more specific and

correct term, " hereditary motor and sensory neuropathy, " doesn't

exactly roll off the tongue.

But this spring, thousands if not millions of Americans learned of

the disease when professional basketball player Todd MacCulloch

announced that CMT-related symptoms had forced him to take a leave

of absence from the sport and might well have ended his career.

Several stories in the national sports media described the tingling

and lack of sensation in the Philadelphia 76er's hands and feet, the

way he must concentrate to climb stairs without kicking them, the

way he occasionally trips over nothing at all.

The CMT community has reached out to MacCulloch, letting him know

he's not alone.

" Obviously, people I know care about me, " the 27-year-old MacCulloch

told the Philadelphia Daily News. " But there're people I've never

met who have sent letters that said, 'I have CMT, and the doctors

told me that nothing was going to work, but this has worked for me.' "

As tragic as MacCulloch's story is, however, it may have a silver

lining.

" I really hate to be like this, but I am excited that someone in the

public eye has CMT, " a CMT patient named wrote in a posting to

Glick's message board. " Maybe now when I say CMT people will respond

with 'Oh, that,' instead of 'What's that!?' I feel very bad for

Todd. I can't even express how bad I feel. I know we have all felt

his pain. "

Perhaps MacCulloch will ultimately conquer his symptoms-some forms

of CMT are milder than others-and mount a comeback reminiscent of

Lance Armstrong's triumphant return from cancer. Maybe MacCulloch

will take advantage of his celebrity to educate the public about CMT

after his retirement from basketball, as Muhammad Ali has done for

Parkinson's disease. Either scenario would surely be applauded by

the CMT community.

But even if MacCulloch isn't cut out to be a spokesperson for CMT,

even if his only interaction with his fellow patients is through

anonymous postings on an Internet discussion board, the CMT

community will still owe him their appreciation. Because even the

Internet, as powerful as it is, cannot show the world the human face

of CMT the way that Todd MacCulloch has done simply by being who he

is.