Rare illness leaves parents to wonder if daughters will be able to reach goals
BY MARY ANN _ROSER Cox News Service

Tate

For Michelle Tate, the start of a new school year brings fresh hope. Maybe she won't miss the big events. Maybe she won't lose touch with her friends. Maybe her last year of high school will be different.

If only getting out of bed weren't so hard.

For the past four years, the 17-year-old Round Rock, Texas, girl has suffered from searing headaches that often leave her too weak to shower, dress or get to school. She willed herself out of bed every day the first week this year, but she missed two days the next week.

Michelle has intracranial hypertension, an incurable illness that causes a buildup of spinal fluid in the brain and triggers headaches, nausea, fatigue and vision loss. Some patients go blind.

On many days, IH, as it is known, leaves Michelle crumpled on the bed in her darkened room. Prescription drugs sometimes help, but there are days when nothing seems to alleviate the pain.

"I've been sick so long, I don't know what it's like (to feel well)," Michelle said.

The struggle to get well from uncommon diseases can be lonely for families and patients. They comb the Web for answers, search for support from others with the disease and seek out the best doctors. Michelle's parents, Jacque and Ron Tate, went to a patient conference in Portland, Ore., last October and realized they had to get involved - for their sake and for Michelle's.

Turner

The conference, sponsored by the Intracranial Hypertension Research Foundation, prompted the Tates to sponsor a golf tournament this summer in Austin, Texas, to help the foundation raise money for research. The Tates raised $36,000 to seed a project, and they plan to make the tournament an annual event.

Jacque Tate, 46, president of a construction com- pany she and her husband own, also plans to approach students at the University of Texas about making a documentary about living with chronic IH to raise awareness of the disease.

IH occurs in about one of every 100,000 people in the general population, making it uncommon, experts said. But it affects an estimated one of 5,000 obese women between the ages of 20 and 45 - making it twice as common as cervical cancer in that age group, said Dr. Emanuel Tanne, a retired ophthalmologist and chairman of the IH foundation board.

As the obesity epidemic worsens, there are fears that IH will become more common, said Dr. Jason Rosenberg, an assistant professor of neurology and director of Johns Hopkins Headache Center at Bayview, Texas.

There are several kinds of IH, one of which can be caused by a head injury. Other forms have medical causes, including blood clots and an excess of vitamin A in the body. Exposure to certain drugs, including the acne medication Accutane, has been known to trigger IH; Accutane's warning label says the drug has been associated with IH. Tanne said Accutane caused the illness in his daughter when she was in college.

The main drug for treating IH is Diamox, which is used to treat epilepsy and reduces pressure in the eye. But many patients have to undergo spinal taps to relieve the pressure on their brains. Complications from the procedure include serious infections and damage to the spinal cord. Michelle has had two spinal taps.

Others opt for surgery, which involves having a shunt implanted in their bodies to drain excess fluid into the abdomen. The shunts carry risks because they can become clogged or infected or not drain properly, Rosenberg said.

Teachers who serve homebound students in Michelle's school district taught the teen during her sophomore and junior years because she missed so many days at school.

Through her teachers, she learned that another girl in her subdivision, 12-year-old Haley Turner, also suffers from IH. Haley has been dealing with intracranial hypertension for more than three years - she has intense headaches, body aches, ringing in her ears and stiffness in her neck and back. Neither girl knows the cause of her illness.

"When you've been sick for so long, it's depressing," Haley said. "You feel like your life is over."

The girls have not met yet. But earlier this month, Jacque Tate met Haley's mom, Lynn Turner, and found a potential ally to enlist in the cause.

The two shared stories about their girls.

Before she got sick, Michelle was vibrant and dreamed of becoming a marine biologist, Jacque Tate said. Now, the mother wonders about her daughter's prospects for college, a career and life beyond that.

"It's so hard to watch the dreams disappear with the disease," she said.

Both girls went undiagnosed for many months and said they got used to hearing doctors tell them their illness was psychosomatic and hearing classmates call it an excuse to play hooky.

Haley, who has had three spinal taps, has been ill for weeks on end and has emerged with her limbs curled, said Lynn Turner, 45. Haley said she is lucky her friends still visit; Michelle said so many of hers have stopped calling over the years.

"There have been a lot of letdowns," Michelle said. "My hope is that one day I could wake up and just feel better." ¦