Articles about Michele

Teen seeks path through her constant pain

The New Britain Herald
Author: BRIAN WOODMAN JR.
Janurary 3, 2009
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.

Copyright (c) 2009 The Herald

Record Number: 4e866d7cca9f927147a17ef4a46ba7339e43dd5

Parish Rallies in Generous Support of Teenager 

Written by Mary J. Tunison
December 6, 2006

Michele DiPietro and her dad, Michael(Photo courtesy of the DiPietro Family)FARMINGTON – When the DiPietro family needed some heavy-duty support, members of their church community, St. Patrick Parish in Farmington, rose to the occasion.Within two short months, the parish has raised $85,149 for one of its young members, Michele DiPietro, who has been diagnosed with a rare and devastating disease known as reflex sympathetic dystrophy or RSD.Michele’s battle began when she was 11, after injuring an ankle while playing soccer. Time passed but the pain grew worse. The slightest touch to her foot triggered intense, burning pain, and it began to spread.The accident occurred in March 2002. By May, Michele was undergoing a series of tests from bone scans to M.R.I.’s. The results were inconclusive.Michele and her parents went from one hospital to another in search of answers. Michele underwent scores of treatments, from traditional medications and physical therapy to alternative medicine, and spent countless hours in emergency rooms because of the progression of RSD and complications from the medications. Over the past five years, Michele has used crutches or a wheelchair when the pain was most severe.RSD, also known as complex regional pain syndrome (CRPS), is a chronic, highly painful and progressive neurological condition that affects skin, muscles, joints and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. However, many cases of RSD involve only a minor injury, such as a sprain.The symptoms include intense pain that is out of proportion to the severity of the injury. The disease is characterized by various degrees of burning pain, swelling, discoloration of the skin and sensitivity to touch. Because there currently is no cure for RSD, the goals of treatment include controlling and minimizing pain and preventing progression of the disease.When Father Mark Flynn, Pastor of St. Patrick’s, first heard of the DePietro family’s plight, he sprang into action, getting the word out to his parishioners through word of mouth, bulletins and articles.“The response was overwhelming,” said Father Flynn. “All of the parishioners have been so very generous. In addition, four families have donated huge amounts of money, which has been an enormous help.”Father Flynn explained that the money will help defray some medical expenses that have accrued over the years. “This has been the greatest blessing for them,” explained Father Flynn.Because many of the treatments for RSD are experimental and not FDA-approved, insurance coverage has been denied for most of them. The family has spent thousands of dollars on treatment, travel and other medical-related expenses.

It has been a nightmare for the family. It was hard enough for Mr. and Mrs. DiPietro to know their daughter was suffering. It was worse encountering baffled physicians who really didn’t know what they were up against. And it was compounded by the assumptions of those, including doctors, who thought it might just all be in her head.

It wasn’t until a woman from their parish directed them to Dr. Robert J. Schwartzman that they found someone who really understood their plight.

Dr. Schwartzman, a professor and chairman of neurology at the MCP Hahnemann School of Medicine in Philadelphia, is a specialist and pioneer in RSD research who has researched RSD/CRPS for more than 30 years. He has treated more than 4,000 people with RSD.

He usually does not treat children, Mrs. DiPietro said. Besides, appointments with him are made years in advance.

However, something intervened in Michele’s case.

“I was given an appointment three years out,” explained Mrs. DiPietro. “I called back on Monday, and spoke to the correct person and she gave me an appointment for the next week, November seventh, the day my father died. I knew that it was a message from my dad and God that I had to go to this appointment.”

Dr. Schwartzman diagnosed Michele as having a severe case of RSD.

Most of Dr. Schwartzman’s work with RSD patients takes place in Germany. The best he could offer her in the United States was a series of treatments involving the drug ketamine, which costs about $800 per day. The treatments have not helped.

Now, the family is trying to raise enough money to fly Michele to Germany for a procedure that has proven results in relieving pain. The treatments, which Dr. Schwartzman performs in Germany, cost between $40,000 and $50,000.

The trial treatments employ high doses of ketamine, an anesthetic, to block abnormal pain receptors. The procedure is considered successful, even though it is extreme and dangerous.

Between sighs and tears, Karen DiPietro admitted, “It is so hard to see Michele suffering this way. I would do anything and everything if there was even the slightest possibility of relieving her pain.”

Although this experience has nearly torn her apart emotionally, Mrs. DiPietro said it is her faith that keeps her going.

“What doesn’t destroy you will make you stronger,” she said, “and I’m trying very hard to be strong for Michele. I know it’s all in God’s hands.” She went on to say that she believes God is using Michele’s suffering for good and that it has brought about a sense of unity and perspective in their church.

Prior to her injury, Michele enjoyed soccer, water skiing, playing in a band, dancing, field hockey and hanging out with her friends. She has not attended school in months but she does take online courses to keep up. She spends many days in bed, immobilized by pain.

“Our biggest hope is that it will all work out and she [Michele] can live a normal life again.”

Michele is not giving up. She tries to focus outwardly instead of inwardly. During her hospital stays, she’s made time to visit the neonatal care units and helped to cradle at-risk babies born to drug addicted mothers.

Although Michele struggles with some harsh realities right now, she dreams of a day when she might live a normal life.

She hopes one day to become a physical therapist.

Parish Rallies in Generous Support of Teenager – catholictranscript.org

Comments are closed.