CMT in the news!

[Guest guest]

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

BioMechanics

May 2003

EDITOR'S MEMO

MacCulloch puts face on anonymous disease

By: Jordana Bieze

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.

[Guest guest]

Hi Gretchen:

What a great article. Thank you for your unrelenting efforts in bringing CMT

to the forefront of the public and medical community.

Thanks again! You are an inspiration to me.

Beckingham

Corporate Nice Guy