MacCulloch puts face on anonymous disease

Published in the May 2003 issue of BioMechanics

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 Yahoo members hosted by CMT patient Gretchen Glick (groups.yahoo.com/group/CMTUS/).

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 Howard 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 Jenny 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.


Copyright 2008 Jordana Foster – 24 Kirkland Dr, Stow, MA – Email: – Fax: (815) 346-5239