Whether patients, family members, medical professionals or casual browsers, Americans are going online to find health and medical information in increasing numbers. In 1998, 22 million U.S. adults used the Internet to research diseases, treatments, prescription drugs and related medical data, according to Internet research firm Cyber Dialogue, which estimates the number will grow to at least 33 million by 2000.

What, exactly, are people seeking? Support, comfort and, above all, facts. "Before the Internet, I didn't know anything about the drugs I was taking," says Lisa Trainor, who takes medication to control her epileptic seizures. "Now, I can go to the FDA site and read about the side effects or read about new medicines as they're released."

Doctors are embracing the Internet as well. Dr. Stanley E. Order of the Center for Molecular Medicine in Garden City, N.Y., is a radiation oncologist who treats certain types of advanced cancer. He helped develop a Web site (www.molecularoncology.com) that explains treatment options to patients so they "can see the site and make their own decision." And while nothing can replace a doctor's one-on-one counseling, the Internet does open a whole new dimension of health resources for everyday Americans. Here are three people who used the Internet in different ways and are happier and healthier for it.

A mother's tireless search pays off

Andrea Makovicz has had a headache almost every day of her life. When things are good, the suburban Philadelphia 15-year-old just has a garden-variety headache. But when they're bad, she suffers from chronic, excruciating migraines that last for days.

Andrea has consulted a dozen different doctors over the past few years with little success. "Acupuncture, relaxation techniques, whatever they recommended, we tried," sighs her mother, Coleen.

Andrea tried to live a normal life, going to high school and dealing with her chronic pain by popping as many as 10 Tylenols a day (at one doctor's suggestion), then trying to ignore it. "I didn't want to be 'Andrea the Migraine Girl,'" she says. Some suggested her daughter's case was hopeless, but Coleen refused to give up. She bought a computer a few years ago and soon was on the Internet researching headaches, often spending two hours a night looking for something, anything, to help her daughter.

In February, Andrea developed her worst migraine ever. It lasted seven weeks and forced her to leave school. She lost 10 pounds from vomiting. She cried constantly. "We were at our wits' end," Coleen recalls.

But one night, during a routine Internet search, she discovered a Web site for the patient-advocacy group MAGNUM: The National Migraine Association (www.migraines.org). Desperate, Coleen called a phone number listed on the site and spoke with Michael John Coleman, the organization's executive director, for two hours. "He really cared," she says.

Coleman, in fact, helped get Andrea an appointment at the well-respected Jefferson Headache Center in Philadelphia, where specialists determined that, among other things, she was having "rebound headaches": The over-the-counter drugs she was taking were making her migraines worse. Her new doctor had her hospitalized in late March, and she was placed on a new drug regimen. She soon experienced the feeling of not having a headache for the first time.

Andrea is far from cured. She has had several migraines since being discharged and hasn't yet returned to school, although she gets tutored at home. But, her mom says, "with the new drugs she's on, we can usually get her under control in hours as opposed to days."

She discovered she wasn't alone

Lisa Trainor never imagined she could help people. Until about six years ago, she mostly felt purposeless and isolated. "I didn't have many friends. I couldn't work," she says. "I just sat in the house and watched TV."

The 31-year-old from Norwich, Conn., is one of an estimated 2 million people who suffer from tuberous sclerosis, an incurable genetic disorder that causes tumors to grow around the body. The tumors are generally not cancerous but can cause a variety of problems, from mild to severe, depending on where they grow. Lisa, whose mother and 16-year-old daughter also have TS, has tumors on her face-which aren't harmful, though they do look like "a red rash"-and on her kidneys, which are more troublesome. Like many with TS, she also has lesions on her brain that cause epileptic seizures, so she can't do basic things like drive a car or hold a steady job.

But true love and technology turned her life around. In 1993, an ex-boyfriend fixed up Lisa with his friend Patrick. Patrick, a computer consultant, made it his mission to get Lisa interested in computers, which she "hated and didn't know a thing about," she admits. "But he knew I needed something else in my life, so he sort of made me learn." To introduce her to the Internet, Patrick encouraged Lisa to create a Web site. "I said, 'I don't know what to talk about,'" she recalls.

But she quickly found something. Lisa had seen very little about TS on the Web, so she developed and launched a site that described the disorder and sought feedback from visitors. Within days, Lisa's Tuberous Sclerosis Site (www.title14.com/ts) was receiving messages from others with the disease, praising her for sharing her story. A TS researcher in England wrote: "Sometimes I forget why I'm doing this. You reminded me why."

Lisa was astonished. "I, who couldn't do anything, was helping people." Six years later, Lisa operates a TS mailing list and works from home as the webmaster for the National Tuberous Sclerosis Association (www.ntsa.org), which provides information about and funds research on the disease. Two years ago, she traveled to Boston for an NTSA conference and was surprised at the number of attendees who came up to her and said: "You're Lisa! I know you!"

She and Patrick were married on Valentine's Day of 1998. They posted their wedding pictures on the Internet.

He found answers

"Like someone dropped a bowling ball off the Empire State Building onto my stomach." That's how Ron Kauffman, 54, felt when his doctor diagnosed him with prostate cancer three years ago. Like most men, Ron, who lives with his wife, Lisa, in Jupiter, Fla., was horrified at the idea of having his prostate gland removed, the treatment his doctor recommended. "I didn't really think about dying," he says. "I just wanted to avoid the three I's: invasive surgery, incontinence and impotence."

Ron's fears spurred him almost immediately from shock into "research mode." He scoured the Web for information on radiation, cryotherapy, whatever kind of alternate treatments he could find. He e-mailed questions to doctors and checked survival rates. "I was looking for any way out," he says.

But after a few weeks on the Web, it became clear to Ron that surgery was, in fact, his best option. Now his challenge was trying to accept that reality. Ultimately, it was straight talk and reassurance from another prostate patient that convinced Ron to go ahead with conventional surgery. He was surprised to find the procedure "a breeze." It took him a while to recover, but, he says, he has no problem with incontinence, and his sex life is still satisfying. He has been cancer-free for three years.

Now Ron uses the Internet to offer others facing prostate cancer the same man-to-man advice that helped him. His soapbox of choice? A site called OncoLink from the University of Pennsylvania Cancer Center (www.oncolink.upenn.edu), where Ron posted a frank, funny and occasionally graphic essay, "Personal Experiences of a Prostate Cancer Survivor."

The site's managing editor encouraged Ron to post his e-mail address, and now he provides advice and support to others. He says the just-between-us-guys talk is essential to helping men overcome their fears about prostate cancer. "I feel an obligation to help them face facts so they won't make a bad decision to do nothing." And to spread the word, he says, "the Internet is a wonderful tool."

If you're a doctor who uses the Web, or if you're interested in alternative medicine, ACCESS would like to hear from you. E-mail your comments to health@accessmagazine.com.

 

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