By BRIAN WOODMAN JR.
Journal Register News Service

FARMINGTON — Members of the DiPietro family remain optimistic as they prepare for their daughter’s forthcoming trip to Germany to address what they described as a relatively obscure and misunderstood medical condition.

Michele DiPietro, 18, suffers from reflex sympathetic dystrophy. She too appeared optimistic about her future last week, despite the severity of her condition.

Karen DiPietro, her mother, said that between 60 percent and 70 percent of the people with the condition are women between the ages of 40 and 60.

“Michele hurt her right foot playing soccer and traumatized the sympathetic nerve,” Karen said. “She has been diagnosed with RSD. Her foot is constantly sending a signal to her brain telling it that her foot is broken, which it is not. She has had RSD for seven years. During this time, the RSD has traveled throughout her body. She spends most days in bed because the pain is so bad, especially during the winter.

“I stay up at night when she cries. That is the hardest thing in the world, to not be able to make it better and make the pain stop,” Karen said. “I am also worried about her getting depressed. I have been told by several doctors that there is a 96 percent suicide rate with children who have had RSD for over five years. This is no life for a pretty young girl with, hopefully, many years ahead of her.”

Michele went to high school for the first half of her freshman year and has since taken courses online so she can graduate. She has had to cope with not only intense physical pain, but also short-term memory loss.

“I would like to continue with school,” said Michele, who plans to take college courses. “I have always wanted to do something with medicine because I see how they help different people. I would like to do physical therapy, although it would be hard to do my job.”

Michele still tries to remain active with such hobbies as making jewelry. She also enjoys using a laptop computer she recently received.

For other events, “if she knows something is coming up, she’ll rest up,” Karen said.

Karen said people suffering from the condition usually cannot work full time, although her daughter hopes to be an exception.

During her upcoming trip, she will go through a procedure that will include being placed in a Ketamine-induced coma for five to seven days. The family may make the trip in about three months.

The procedure is not approved by the U.S. Food and Drug Administration, according to Karen. But her daughter’s doctor, Robert Schwarzman, told her she must undergo the procedure to avoid being bedridden.

“There is no cure,” Karen said. “Everything we do is experimental.”

Michele tried a variety of treatments, including Reiki, holistic medicine, acupuncture and faith healing. Karen said there has been no success.

Schwarzman, who is based in Philadelphia, is considered an expert on the subject, she said. Michele began seeing him two years ago and periodically travels to Philadelphia.

The family’s church, St. Patrick’s Church, tried to raise money two years ago for the trip, which will cost $200,000, including further booster shots of Ketamine. Michelle didn’t go to Germany during the first year of her treatments with Schwarzman because doctors there were on strike. During the second year, she found she was denied access to the procedure there anyway, because she was not yet 18.

Schwarzman has sent 60 people to Germany over the past four years.

Michele, whose condition has not improved, was put on methadone, Opana, morphine, OxyContin and other drugs by different doctors. A hot tub donated in July by the company ThermoSpas has provided some relief, her family said. The company donates them to children with certain medical conditions.

Karen had hoped for the donation. Before the device was given to the family, she’d said, “A hot tub would help Michele with her pain, but it would also be a wonderful and safe social place for her to hang out with her friends.

“She still has a couple of close friends,” Karen said, “but has not been in school for a few years and has lost touch with several of them.”

That is due, in part, to the condition. Although it has been diagnosed by doctors as early as the Civil War, it remains relatively obscure and misunderstood, according to Karen, and many people even initially expressed doubt over Michele’s condition.

“Because it’s a rare condition, it’s not easily understood by many people,” Karen said.

“Michele was an active girl, playing soccer, lacrosse, swim team, snow skiing and water skiing,” Karen said. “Now I pray every night that Michele will simply have a good day, one with only a little pain where she can get out of bed. It has been very hard on her because she feels her life has been taken away.”

Colder weather makes life more difficult for people with the condition, and Michele said emotional stress can sometimes make the pain worse. She said the death of one of her friends in a car accident last year had a devastating effect on her.

The family referred to a youth in Glastonbury suffering from RSD who successfully contacted Brad Pitt’s publicist to raise awareness of the condition and get support. Karen is contacting celebrities herself, including pop star and “American Idol” judge Paula Abdul, who suffers from the condition due to an injury received during her cheerleading days.

Her goals include helping to increase advocacy and understanding of RSD, including making sure that insurance companies pay more claims related to it, although she said she did not want to see more people misdiagnosed with it as awareness increases.

Anyone wishing to make a monetary donation to the DiPietro family is asked to send it to: Michele DiPietro, Farmington Savings Bank, 32 Main St., Farmington, CT 06032. The family will also be building a Web site at miraclesformichele.com.